Determining the genetic aetiology of early onset Parkinson's disease

Lead Research Organisation: University College London
Department Name: Institute of Neurology

Abstract

Parkinson?s disease (PD) is a common degenerative brain disease in which loss of nerve cells leads to slowness of movement, tremor, stiffness and difficulty walking. As the disease progresses some patients develop dementia and become increasingly incapacitated. There are no treatments that reverse the damage to the brain or halt the disease process. Some younger patients with PD have autosomal recessive genetic disease. We all carry two copies of about 20,000 genes. In autosomal recessive disease two faulty copies of a gene lead to loss of gene function. In this form of genetic inheritance there is usually no increased risk of disease for children or parents of affected patients. To date three genes have been identified for autosomal recessive PD which have been important in leading to new genetic tests for PD, and in helping us to understand the disease processes. We suspect that PD is a heterogeneous disease, with many different processes leading to a similar clinical syndrome. The main goal of this work will be to identify new disease genes which will enable more accurate genetic testing for this condition, the appropriate targeting of new treatments to the correct patients and the development of new treatments in cell and animal models. In our work we have shown that among early onset PD patients there is strong evidence for the existence of further autosomal recessive genes and we have identified a set of 71 early onset PD patients (EOPD) who are likely to have this type of gene change, causing PD. We will identify new genes that cause PD by detailed study of these 71 patients using a recently developed technique called next generation sequencing. This allows a rapid scan for gene changes across all 20,000 genes in the human genome. This will identify a series of possible new genes. The second stage will be to try to confirm these findings in a large representative set of 1300 EOPD patients. The identification of new genes for PD will lead to new diagnostic tests, a better understanding of various forms of PD and the development of new cell and animal models for the disease. This will allow the development of new treatments that we hope will improve the outlook for people with PD.

Technical Summary

Although Parkinson?s disease (PD) is a common age dependant neurodegenerative condition about 5% of all PD patients develop disease before the age of 50 (Early onset PD ? EOPD). Three autosomal recessive EOPD genes (parkin, PINK1 and DJ1) have been identified and their discovery has led to new diagnostic tests and insights into the pathogenesis of PD. Many groups have developed cell and animal models of PD based on these genes. There is compelling evidence that there are further autosomal recessive (AR) genes to be identified for EOPD, based on segregation analyses, comprehensive mutation screening and on our own work on homozygosity mapping. We have ascertained over 250 UK patients with EOPD and are members of the International Consortium for PD Genomics (ICPDG), which has collated samples and data on 1400 EOPD patients. Previous gene identification has been based on linkage in known consanguineous families. The advances in next generation sequencing (NGS) mean that we are now in a position to resolve the genetic architecture of EOPD, in a ?linkage-free? approach. Our work indicates that a two-stage approach will be the most efficient. We have demonstrated an excess of genomic homozygosity in EOPD, largely contributed to by a subset of 71 patients in our sample set who carry an 8 Mbp or longer run of homozygosity (ROH). In stage 1 we will examine the entire exome of each of these 71 patients to identify genes that contain a homozygous rare putative loss of function (LOF) mutation. We anticipate that this will identify approximately 20 candidate genes. In stage 2 the exonic sequence of each of these 20 genes will be screened for homozygous and compound heterozygous mutations in the remaining 1300 EOPD patients and 4000 controls (via the UK10K and 1000 genomes projects). Case control analysis of rare bi-allelic LOF mutations will identify which loci are new AR PD genes. This two-stage approach provides a powerful (power 0.99) and efficient approach to identifying new genes for EOPD. Identifying the genetic basis of PD in these patients is the first step in understanding disease heterogeneity and appropriately designing and targeting disease modifying therapies. This work will also inform the design and provision of new diagnostic genetic screening panels.

Publications

10 25 50
 
Description Driver and Vehicle Licensing Agency Medical Advisory Panel 2016
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Honorary Medical Advisor with expertise in Parkinson's disease for Secretary of State for Transport's Panel on Driving and Disorders of the Nervous System (DVLA)
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description NIHR Clinical Research Network North Thames Specialty Lead
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact As the NIHR CRN specialty lead for Neurodegeneration, Prof Huw Morris is involved in influencing research decisions and activity.
 
Description Prof Huw Morris teaching at the Wellcome Genome Campus Molecular Neurodegeneration course
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact The programme will focus on several disorders including Alzheimer's disease, Parkinson's disease, Fragile X, Spinocerebellar ataxia and amyotrophic lateral sclerosis. The course is aimed at individuals working in neurodegenerative research, neurogenetics or translational neuroscience.
 
Description Prof Huw Morris teaching to postgraduate students
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
 
Description A Longitudinal Biomarker Study of Sports Related Head Injury and Outcomes
Amount £500,000 (GBP)
Organisation The Drake Foundation 
Sector Charity/Non Profit
Country Unknown
Start 05/2015 
End 05/2018
 
Description A Longitudinal Clinical and Biomarker Study of Progressive Supranuclear Palsy and Cortico-Basal Syndrome
Amount £294,808 (GBP)
Organisation Progressive Supranuclear Palsy Association (PSPA) 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2014 
End 12/2016
 
Description A participant's guide to user- friendly information in genetic research
Amount £1,498 (GBP)
Organisation Wellcome Trust 
Department Wellcome Trust Institutional Strategic Support Fund
Sector Charity/Non Profit
Country United Kingdom
Start 01/2015 
End 06/2015
 
Description Autophagic dysfunction in cellular models of inherited MND/FTLD (co-applicant)
Amount £184,000 (GBP)
Funding ID Blake/Mar12/815-791 
Organisation Motor Neurone Disease Association (MND) 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2012 
End 10/2015
 
Description CRN Research Capability Funding - PFP Research Assistant post
Amount £28,162 (GBP)
Organisation National Institute for Health Research 
Department NIHR Clinical Research Network North Thames
Sector Public
Country United Kingdom
Start 01/2016 
End 03/2016
 
Description Clinical and pathological study of chronic traumatic encephalopathy in retired professional soccer players
Amount £5,000 (GBP)
Organisation The Drake Foundation 
Sector Charity/Non Profit
Country Unknown
Start 08/2015 
End 02/2016
 
Description Create a nested CPT resource with the CANDAS biobank using the CANDAS consent to store genetic data from PD-STAT
Amount £45,000 (GBP)
Organisation Cure Parkinson's Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2015 
 
Description Defining the genetic aetiology of early onset Parkinson's disease
Amount £515,338 (GBP)
Funding ID G1100643 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 11/2011 
End 11/2014
 
Description Development of CSF biobank and CSF biomarkers for PSP
Amount £184,697 (GBP)
Organisation Progressive Supranuclear Palsy Association (PSPA) 
Sector Charity/Non Profit
Country United Kingdom
Start 07/2015 
End 06/2017
 
Description European Registry and Longitudinal Study of Cortico-Basal Syndrome
Amount £305,000 (GBP)
Organisation CBD Solutions 
Sector Private
Country Unknown
Start 11/2014 
End 11/2016
 
Description Filling the genetic gaps-exome sequencing in Parkinson's disease (co-applicant)
Amount £50,000 (GBP)
Funding ID G-1107 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 12/2011 
End 11/2013
 
Description Movement Disorders Centre UCL
Amount £300,000 (GBP)
Organisation Edmond J Safra Foundation 
Sector Charity/Non Profit
Country Liechtenstein
Start 06/2017 
 
Description Movement Disorders Centre UCL
Amount £400,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 06/2017 
 
Description NIHR CRN Neuro-CRF Nurse Support
Amount £34,154 (GBP)
Organisation National Institute for Health Research 
Department NIHR Clinical Research Network North Thames
Sector Public
Country United Kingdom
Start 02/2017 
End 03/2018
 
Description Parkinson's Families Pilot Project - Genomics England Study
Amount £48,972 (GBP)
Funding ID K-1501 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2016 
End 01/2017
 
Description Parkinson's repository of bio samples and network datasets: PRoBaND
Amount £550,000 (GBP)
Funding ID J-1101 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2012 
End 12/2016
 
Description PhD studentship
Amount £99,169 (GBP)
Funding ID H-1703 
Organisation Parkinson's UK 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2017 
End 10/2020
 
Description Research Capability Funding - PSP Study Coordinator post
Amount £39,652 (GBP)
Organisation National Institute for Health Research 
Department NIHR Clinical Research Network North Thames
Sector Public
Country United Kingdom
Start 01/2016 
End 03/2016
 
Description Royal Free Parkinson's PPI Research Group
Amount £550 (GBP)
Organisation Wellcome Trust 
Department Wellcome Trust Institutional Strategic Support Fund
Sector Charity/Non Profit
Country United Kingdom
Start 01/2015 
End 06/2015
 
Description Sara Koe Research Fellowship
Amount £228,208 (GBP)
Organisation Progressive Supranuclear Palsy Association (PSPA) 
Sector Charity/Non Profit
Country United Kingdom
Start 08/2016 
End 08/2019
 
Description Strategic Biomarkers Initiative Project
Amount £35,000 (GBP)
Organisation National Institute for Health Research 
Department NIHR Biomedical Research Centre
Sector Academic/University
Country United Kingdom
Start 04/2015 
End 03/2016
 
Description The role of common DNA variants in Parkinson's disease (Wellcome Trust Case Control Consortium 2)
Amount £25,000 (GBP)
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2008 
End 12/2010
 
Title Parkinson's disease - biological collection 
Description Collection of DNA samples and Peripheral Blood Lymphocytes for PD patients 
Type Of Material Biological samples 
Provided To Others? No  
Impact Use in gene mapping studies 
 
Title CANDAS/WPG database 
Description Records of patient details, consultant details, clinical summary and family history 
Type Of Material Database/Collection of data 
Provided To Others? No  
Impact Enables researchers to store important patient details for large numbers of study participants 
 
Title Genie Genomics England database 
Description Genie is an online database that manages recruitment, data collection and submission to Genomics England 
Type Of Material Database/Collection of data 
Provided To Others? No  
Impact Ease of data collection and search 
 
Title PD-Samples database 
Description Microsoft Access database holding summary genetic results, tracking of genetic analysis and summary clinical data across multiple studies/cohorts. 
Type Of Material Database/Collection of data 
Year Produced 2016 
Provided To Others? No  
Impact Improved tracking of various genetic analyses on samples. 
 
Title REDCap databases 
Description Research Electronic Data Capture (REDCap) is a secure web application for building and managing online surveys and databases. Databases have been set up for current projects in the research team, including the Parkinson's Families Project, PROSPECT and the European Registry of CBD. These databases allow for data entry by both researchers and participants around the UK online through a secure web connection, and could facilitate easy data sharing in the future to collaborators. The databases hold large amounts of clinical and phenotypic data from research participants. 
Type Of Material Database/Collection of data 
Provided To Others? No  
Impact None as yet. 
URL http://project-redcap.org/
 
Description Chromosome 9 MND 
Organisation National Institute on Aging
Department Laboratory of Neurogenetics
Country United States 
Sector Public 
PI Contribution Clinical/pathological/cell biology/genetic analysis
Collaborator Contribution Genetic analysis
Impact Publications/filing the patent/NHS for MND developed/Follow on grant from MND Association/talk for patients' group
Start Year 2009
 
Description Chromosome 9 MND 
Organisation University College London
Department Division of Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution Clinical/pathological/cell biology/genetic analysis
Collaborator Contribution Genetic analysis
Impact Publications/filing the patent/NHS for MND developed/Follow on grant from MND Association/talk for patients' group
Start Year 2009
 
Description Collaboration with Birmingham PD-MED 
Organisation University of Birmingham
Department Birmingham Clinical Trials Unit
Country Unknown 
Sector Academic/University 
PI Contribution A collaborative study involving large randomised assessment of the relative clinical and cost-effectiveness of classes of drugs for Parkinson's disease. Sharing of samples and data.
Collaborator Contribution Approximately 2000 participants recruited through more than 80 neurology and care of the elderly units throughout the UK.
Impact None so far.
Start Year 2015
 
Description Collaboration with Institute of Medical Genetics, University Hospital of Wales, Cardiff 
Organisation University Hospital of Wales
Country United Kingdom 
Sector Hospitals 
PI Contribution In collaboration with the NHS Medical Genetics Service in Cardiff we have worked on the development and provision of genetics testing for parkin and LRRK2 - we have worked on the preparation for the submission to the UK Genetic Testing Network
Collaborator Contribution identification of potential research collaborators via users of the NHS service
Impact Our collaboration with the NHS Medical Genetics Service in Cardiff has led to the development and service provision of NHS based diagnostic and predictive testing for mutations in parkin and LRRK2 We have also published on other Mendelian conditions including Alzheimer disease, Fronto-temporal dementia and Amyotrophic lateral sclerosis
Start Year 2008
 
Description Collaboration with NHS Neurogenetics UCLH 
Organisation University College London Hospital
Department University College London Hospitals Charity (UCLH)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Developing NHS testing for PD and following up on NHS patients
Collaborator Contribution Provision of NHS genetic testing
Impact -
Start Year 2014
 
Description Collaboration with National Institute of Health Research (NIHR) 
Organisation National Institute for Health Research
Country United Kingdom 
Sector Public 
PI Contribution Our research team has contributed to NIHR recruitment by recruiting to the Parkinson's Families Project, which is adopted on the NIHR portfolio of studies. Increased recruitment assists with allocation of funding to sites and networks within the NIHR.
Collaborator Contribution The NIHR Clinical Research Network have provided nurse and staff support for recruitment at hospitals around the UK. In addition, the NIHR have supported staff salary costs for the research assistant position at the Royal Free Hospital by awarding Research Capability Funding in 2016 and 2017.
Impact This collaboration has resulted in increased recruitment and improved delivery to both the 100,000 Genomes Project, the Parkinson's Families Project, and other studies within the NIHR portfolio. Staff from both Genomics England Project and NIHR CRN collaborate closely to optimise recruitment, and can be trained to recruit in a variety of studies. The NIHR Research Capability Funding has also enabled extension of the Research Assistant post, allowing recruitment to continue into 2017.
Start Year 2016
 
Description Collaboration with Plymouth - Molecular Genetic Studies of Neurodegenerative Disorders 
Organisation Peninsula College of Medicine & Dentistry
Country United Kingdom 
Sector Academic/University 
PI Contribution A collaborative study involving the collection and storage of DNA and protein samples from patients in comparison to participants without Parkinson's. This research team contributed through genotyping of samples and follow up of participants to collect key clinical data.
Collaborator Contribution Recruitment and collection of samples for over 2000 participants within the UK.
Impact None as yet
Start Year 2015
 
Description Collaboration with Plymouth - PD-STAT study 
Organisation University of Plymouth
Country United Kingdom 
Sector Academic/University 
PI Contribution The study investigates the potential of simvastatin to slow or halt the progression of Parkinson's disease. This research team has contributed by organising the addition of a genetics sub-study to the main clinical trial.
Collaborator Contribution Collection of DNA samples and clinical data
Impact None as yet.
Start Year 2015
 
Description Collaboration wth Genome England Limited 
Organisation Genomics England
Country United Kingdom 
Sector Public 
PI Contribution Recruitment of Early Onset PD families for whole genome sequencing
Collaborator Contribution Family recruitment - will involve analysis of data and correlation with clinical and para-clinical measures
Impact No outputs as yet
Start Year 2013
 
Description Dr Alan Whone University of Bristol GDNF trial 
Organisation University of Bristol
Department Institute of Clinical Neurosciences
Country United Kingdom 
Sector Academic/University 
PI Contribution Genetic analysis of samples for pharmacogenetics analysis.
Collaborator Contribution Contribution of DNA samples for genetic analysis, putting our research team in contact with patients who have taken part in the clinical trial so we can recontact them.
Impact Results of pharmacogenetic analysis
Start Year 2016
 
Description Google Genomics Consortium 
Organisation National Institutes of Health (NIH)
Country United States 
Sector Public 
PI Contribution Upload of exome sequencing data to Google Cloud, coordination of sign-off on Memorandum of Understanding and research ethics committee approvals.
Collaborator Contribution Contribution of samples and exome sequencing data
Impact Approval from relevant UK Research Ethics Committees, circulation and sign-off of Memorandum of Understanding from partner universities.
Start Year 2015
 
Description Google Genomics Consortium 
Organisation University of Birmingham
Country United Kingdom 
Sector Academic/University 
PI Contribution Upload of exome sequencing data to Google Cloud, coordination of sign-off on Memorandum of Understanding and research ethics committee approvals.
Collaborator Contribution Contribution of samples and exome sequencing data
Impact Approval from relevant UK Research Ethics Committees, circulation and sign-off of Memorandum of Understanding from partner universities.
Start Year 2015
 
Description Google Genomics Consortium 
Organisation University of Glasgow
Department Institute of Neuroscience and Psychology
Country United Kingdom 
Sector Academic/University 
PI Contribution Upload of exome sequencing data to Google Cloud, coordination of sign-off on Memorandum of Understanding and research ethics committee approvals.
Collaborator Contribution Contribution of samples and exome sequencing data
Impact Approval from relevant UK Research Ethics Committees, circulation and sign-off of Memorandum of Understanding from partner universities.
Start Year 2015
 
Description Google Genomics Consortium 
Organisation University of Plymouth
Country United Kingdom 
Sector Academic/University 
PI Contribution Upload of exome sequencing data to Google Cloud, coordination of sign-off on Memorandum of Understanding and research ethics committee approvals.
Collaborator Contribution Contribution of samples and exome sequencing data
Impact Approval from relevant UK Research Ethics Committees, circulation and sign-off of Memorandum of Understanding from partner universities.
Start Year 2015
 
Description Imperial Brain Bank 
Organisation Imperial College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Analysis of DNA samples from Parkinson's disease brain tissue, tracking of research participants who may register as brain donors or donate their brains for post-mortem
Collaborator Contribution Contribution of Parkinson's disease brain samples for genetic analysis, along with clinical data.
Impact Analysis is still underway.
Start Year 2017
 
Description International Consortium for PD Genetics 
Organisation National Institute on Aging
Country United States 
Sector Public 
PI Contribution Collaboration with Holland, Germany, France and US in the further analysis of Genome Wide Association Studies in PD
Collaborator Contribution Pooling of data - allowing large scale analysis of homozygosity in PD and identification of novel loci for late onset PD
Impact Meta-analysis of data reveals 11 loci for late onset PD; manuscript submitted to Lancet Part of this collaboration includes the collaborative analysis of Copy Number Variants and Homozygosity Mapping in Early Onset PD within the same consortium
Start Year 2009
 
Description NIAGADS data request 
Organisation National Institute on Aging
Country United States 
Sector Public 
PI Contribution Analysis of combined clinical data from the NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS).
Collaborator Contribution Access to large datasets of human genomic and phenotypic data generated by NIA supported grants and cooperative agreements and/or NIA funded biological samples.
Impact None as yet
Start Year 2016
 
Description PROBAND 
Organisation University of Glasgow
Country United Kingdom 
Sector Academic/University 
PI Contribution A collaborative study of the genetics of Parkinson's disease following 2240 UK patients with PD. Arranging and carrying out genotyping.
Collaborator Contribution Organisation and collection of samples over 50 sites in UK
Impact None so far
Start Year 2012
 
Description Prof Tom Foltynie, UCL Exenatide trial 
Organisation University College London
Department Institute of Neurology
Country United Kingdom 
Sector Academic/University 
PI Contribution Genetic analysis of DNA samples with SNP array (NeuroChip) for pharmacogenetic analysis.
Collaborator Contribution Putting our research team in contact with patients who have taken part in the Exenatide trial so they can be contacted for further clinical information and asked to donate additional DNA samples for genetic analysis.
Impact Genetic analysis of DNA samples is underway.
Start Year 2016
 
Description Queen Square Brain Bank 
Organisation University College London
Department Queen Square Brain Bank
Country United Kingdom 
Sector Hospitals 
PI Contribution Genetic analysis of DNA samples from Parkinson's disease brain samples, and extraction of clinical data from historical notes.
Collaborator Contribution Contribution of Parkinson's disease brain samples for genetic analysis, tracking research participants who have donated their brains for post-mortem analysis.
Impact Analysis is still underway.
Start Year 2016
 
Description South African PD sample sharing 
Organisation North-West University
Country South Africa 
Sector Academic/University 
PI Contribution Genotyping of PD samples
Collaborator Contribution Collection and sharing of DNA and clinical data from early onset and familial Parkinson's/ parkinsonism patients.
Impact None as yet
Start Year 2015
 
Description UK PD WTCCC2 Consortium 
Organisation University College London
Department Institute of Neurology
Country United Kingdom 
Sector Academic/University 
PI Contribution We have contributed samples from PD patients and are collaborating in the analysis of autozoygosity, copy number variants and gene pathway analysis in these datasets.
Collaborator Contribution We have collaborated in the whole genome genotyping of approximately 2000 UK Parkinson's disease subjects. The data derived from this is being used to supplement the primary analysis in the MRC grant and this has lead on to further follow on funding for the consortium from the Parkinson's disease society.
Impact Obtained follow on funding from Parkinson's disease society for replication and data analysis Primary UK PD GWAS paper - published in Human Molecular Genetics
Start Year 2008
 
Title C9PORF72: Method for Diagnosing a Neurodegenerative Disease 
Description H. R. M is a co-applicant on a patent application related to C9ORF72 - Method for diagnosing a neurodegenerative disease (PCT/GB2012/052140). 1 in 50,000 people have motor neuron disease (MND). Amyotrophic lateral sclerosis (ALS) is a form of MND characterized by the death of motor neurons in the brain, brainstem and spinal cord. This leads to wasting in the limbs and progressive paralysis, and there are no effective therapies - it is fatal due to eventual respiratory failure, typically two to three years after the onset of symptoms. Around 5% of ALS cases are familial (inherited). Frontotemporal dementia (FTD) is a relatively common cause of dementia in younger patients but is overall less common than Alzheimer disease or Cortical Lewy body disease. Symptoms vary but can include behavioural and personality changes, problems with language skills and inability to plan or organize complex tasks. There is evidence to suggest that there is an overlap with these ALS and FTD as symptoms of both conditions can occur in the same patient, in the same families and as alternative presentations of pathogenic C9ORF72 (OMIM 614260) mutations. 
IP Reference WO2013030588 
Protection Patent application published
Year Protection Granted
Licensed No
Impact The recent discovery of large 6bp repeat expansions in chromosome 9 open reading frame 72 (C9ORF72 - chromosome location 9p21) is diagnostic of familial ALS and FTD, and may also be used as a predictive test for at-risk familial members [Ref. Neuron 2011, 72(2); 257-68]. Mutations in MAPT, GRN, TARDP and UBQLN2 genes, among others, may cause similar clinical syndromes.
 
Title C9orf72 
Description http://www.wales.nhs.uk/sites3/documents/525/MI-MGN-ALS-FTD_21.pdf 
Type Diagnostic Tool - Non-Imaging
Current Stage Of Development Wide-scale adoption
Year Development Stage Completed 2012
Development Status Under active development/distribution
Impact unknown 
URL http://www.wales.nhs.uk/sites3/documents/525/MI-MGN-ALS-FTD_21.pdf
 
Title Safety and Biomarker Study of EPI-589 in Parkinson's Disease 
Description This is a within-subject, controlled open-label study seeking to determine if EPI-589 can alter the biochemical signature of PD as assessed by peripheral blood and brain imaging biomarkers. Data will also be collected on disease-relevant clinical measures will be collected. This project is sponsored and funded by Edison Pharmaceuticals. 
Type Therapeutic Intervention - Drug
Current Stage Of Development Initial development
Year Development Stage Completed 2017
Development Status Under active development/distribution
Clinical Trial? Yes
Impact The safety trial is still ongoing. 
URL http://www.hra.nhs.uk/news/research-summaries/safety-and-biomarker-study-with-epi-589-in-parkinsons-...
 
Description "Y Move" talk (Leeds) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presented talk at "Y Move" in Leeds.
Year(s) Of Engagement Activity 2016
 
Description ABN Movement Disorders Special Interest Group (ABN MD SIG) meeting (Cambridge) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The inaugural ABN Movement Disorders Special Interest Group (ABN MD SIG) meeting took place on the 15th and 16th of January 2015 at Downing College, Cambridge. The programme was organised by Professor David Burn (Newcastle) and Dr Paul Worth (Cambridge) and included several internationally renowned speakers. The morning session aimed to summarise current topics that have furthered our understanding in the pathophysiology of movement disorders. The event including discussion on topics such as GBA mutations, the role of alpha-synuclein, novel MRI techniques, recent developments in gene sequencing technologies, neuroprotection studies and case presentations undertaken by Prof Huw Morris.
Year(s) Of Engagement Activity 2015
URL http://www.acnr.co.uk/2015/06/abn-md-sig-conference/
 
Description Annual meeting of the Association of British Neurologists (Cambridge) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact Invited talk on current genetic approaches to diagnosis, and emerging faster and less expensive methods of genomic analysis. 615 delegates, including medical students, junior doctors and non-physicians, attended lectures and teaching sessions.

Audience generated positive feedback and reported being stimulated in their knowledge of neurology and genetics.
Year(s) Of Engagement Activity 2013
 
Description Association of British Neurologists - fundraising and council 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Fundraising event and council meeting of the Association of British Neurologists
Year(s) Of Engagement Activity 2016
 
Description Association of British Neurologists Annual Meeting (Harrogate) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Four day meeting organised by the Association of British Neurologists (ABN) that involved workshops, presentations, training, special interest group discussions and poster presentations. Topics included:
- Audit/quality assurance
- Clinical phenomenology
- Diagnostic investigations
- Commissioning neurology services
- Disease pathophysiology
- Therapeutics
- Case presentations
Year(s) Of Engagement Activity 2015
 
Description Association of British Neurologists Council meeting 2016 (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Prof Morris attended the ABN Council meeting, which included lay trustees and council members.
Year(s) Of Engagement Activity 2016
 
Description Association of British Neurologists annual meeting 2016 (Brighton) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Members of the research team attended the conference and presented posters to clinicians, researchers and trainees.
Year(s) Of Engagement Activity 2016
URL http://www.theabn.org/events/forthcoming/abn-annual-meeting-2016.html
 
Description BGS - ALS -Neurodem Cymru 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Invited speaker on Chromosome 9 to NEURODEM Cymru event

unknown
Year(s) Of Engagement Activity 2012
 
Description Barnet Parkinson's patient group meeting (Barnet) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Attended a patient group meeting for Parkinson's patients in the Barnet area. This generated interest in research studies and several patients made contact with the research team to express their interest in being involved in current research studies.
Year(s) Of Engagement Activity 2015
 
Description Biomedical Research Advisory Panel (BRAP) meeting Motor Neurone Disease Association (MNDA) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact This panel of MND research experts, along with Association trustees, discussed research applications in detail. They then decided whether the research is good enough to be funded by the Association and fit within our research strategy.
Year(s) Of Engagement Activity 2016
 
Description BritMODIS 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The meeting provided a forum for education in movement disorders and was organized by the British Geriatrics Society Movement Disorders Section, Association of British Neurologists Movement Disorders Special Interest Group, Parkinson's Disease Nurse Specialist Association and Parkinson's UK. The meeting highlighted current clinical practice and provided a platform to present research outcomes and showcase successful service delivery.

This event was organized for healthcare professionals working in the field of movement disorders. The day provided a forum for scientific discussion and clinical updates and enables a multidisciplinary audience of healthcare professionals to share their experiences of best clinical practice.
Year(s) Of Engagement Activity 2016
URL https://www.eiseverywhere.com/ehome/152739
 
Description CBD Solutions Scientific Meeting (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact The meeting, organised by CBD Solutions, was attended by neurologists and academics and included discussion on:
- Mechanisms of CBD (pathology, genetics, GWAS/tau)
- Models of CBD
- Biomarkers of CBD and cohorts
- Clinic assessments
Year(s) Of Engagement Activity 2015
 
Description Cardiff Neuroscience meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Delivered presentation at Cardiff University Neuroscience meeting
Year(s) Of Engagement Activity 2016
 
Description Committee - PSP 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
Results and Impact Developing Care Standards for PSP

http://www.pspeur.org/care_pathway/
Year(s) Of Engagement Activity 2011
 
Description Cure Parkinson's Trust Research Meeting 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Two research team members delivered brief presentations at the Cure Parkinson's Trust research meeting, to approximately 100 patients, carers and key personnel within Cure Parkinson's Trust. Information about current research trials and planned studies was presented.
Year(s) Of Engagement Activity 2016
 
Description CurePSP 2016 International Research Symposium (New Jersey) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact CurePSP conducts an annual International Research Symposium that brings together international investigators to hear about and discuss the latest advances in prime of life neurodegeneration including PSP, CBD, MSA and related diseases. The Symposium highlighted research by CurePSP grantees. The Research Symposium also assisted the CurePSP Scientific Advisory Board (SAB) in identifying work of exceptional promise, which may then be considered for additional funding. Presentations covered: cell biology research, genetics research, clinical trials, diagnostic criteria and therapeutic opportunities.
Year(s) Of Engagement Activity 2016
 
Description CurePSP Symposium (San Francisco) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact CurePSP conducts an annual International Research Symposium that brings together international investigators to hear about and discuss the latest advances in prime of life neurodegeneration including PSP, CBD, MSA and related diseases. The Symposium highlighted research by CurePSP grantees. The Research Symposium also assisted the CurePSP Scientific Advisory Board (SAB) in identifying work of exceptional promise, which may then be considered for additional funding. Presentations covered: cell biology research, genetics research, clinical trials, diagnostic criteria and therapeutic opportunities.
Year(s) Of Engagement Activity 2016
 
Description Dementia Research Institute meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Meeting to prepare the Dementia Research Institute bid. This was later successfully granted to UCL. The DRI will assemble the necessary critical mass of world-leading researchers and provide access to cutting edge tools and capabilities in order to:

Accelerate the pace of discovery research to identify new targets for drug development
Develop new approaches for delivering effective clinical trials to targeted patient groups
Attract new partnerships with the biopharmaceutical sector to develop new therapeutics and diagnostics and
Develop and promote strategies for interventions that prevent the development or progression of dementia
Provide new insights and technology-based approaches to delivering more effective care and support to people with dementia and their carers.
Year(s) Of Engagement Activity 2016
URL https://www.mrc.ac.uk/about/institutes-units-centres/uk-dementia-research-institute/
 
Description Dementias Portfolio Development Group (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Participated in the Portfolio Development Group at Parkinson's UK, London.
Year(s) Of Engagement Activity 2016
 
Description Dendron UK PD Clinical Studies Group 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Chair of expert group - developing new research in PD

unknown
Year(s) Of Engagement Activity 2012
 
Description Departmental Seminar Series at Addenbrooke's Hosital (Cambridge) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Health professionals
Results and Impact Invited speaker at Departmental Seminar Series at Addenbrooke's Hospital. Delivered presentation on early onset Parkinson's disease.

Educating and sharing information among health professionals.
Year(s) Of Engagement Activity 2011
 
Description Driver and Vehicle Licensing Agency Medical Advisory Panel 2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Prof Morris attended the meeting of the Secretary of State for Transport's Honorary Medical Advisory Panel on driving and disorders of the nervous system. Decisions were made and advice was provided regarding driving and licensing regulations related to neurological conditions.
Year(s) Of Engagement Activity 2016
 
Description Edgware Research day: Parkinson's: Knowledge, Power, Treat. A vision for the future 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact This research day was targeted towards local patients at Edgware Community Hospital and Central London Community Healthcare NHS Trust. Researchers and patients presented talks on Parkinson's research and patient experiences. Talks were supplemented by panels, networking and Question and Answer sessions.
Year(s) Of Engagement Activity 2016
 
Description European Academy of Neurology Symposium (Berlin) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Attended the EAN Neurology Symposium in Berlin which included presentations, teaching courses, hands-on-courses, focused workshops and interactive sessions. Topics included:
- Preclinial neurological diseases
- Expanding fields in neurology
- Modern molecular genetics
- Present and future treatment in movement disorders
Year(s) Of Engagement Activity 2015
 
Description Hay Festival - What is dementia? 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Lecture to 400 members of public at Hay Literary Festival

http://www.walesonline.co.uk/news/health-news/2012/06/07/leading-the-fight-against-dementia-in-wales-91466-31133563/
Year(s) Of Engagement Activity 2012
URL http://www.walesonline.co.uk/news/health-news/2012/06/07/leading-the-fight-against-dementia-in-wales...
 
Description IBRO-ARC Egypt Neuroscience School (Cairo) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited talk on the genetics of Parkinson's Disease and diagnosis of movement disorders at IBRO-ARC Egypt Neuroscience School on "Epigenetics and neurological disorders: from bench side to bedside (PD in Focus)".

Unknown
Year(s) Of Engagement Activity 2014
 
Description ICOSA Meeting - ALS/FTD 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited speaker at meeting on Chromosome 9

unknown
Year(s) Of Engagement Activity 2012
 
Description IPDGC meeting (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Organised and hosted a successful meeting with members of the International Parkinson's Disease Genetics Consortium. Members presented and discussed topics including:
- Clinical data and potential collaboration
- Genotype/phenotype data on progression and head injury
- Data collection - HPO, Genomics England and CDE
- Studies in at-risk cohorts
- Potential research questions, such as progression, age of onset analysis, progression to dementia, familial analysis, pathologically confirmed cases, pathology as a quantitative trait, tremor vs. non-tremor dominant cases, and genotyping in prospective cohorts
- Possible actions
Year(s) Of Engagement Activity 2015
 
Description IPDGC meeting (Paris) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Meeting of members in the International Parkinson's Disease Genetics Consortium in Paris.
Year(s) Of Engagement Activity 2015
 
Description International Conference on Frontotemporal Dementias (Manchester) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Presented paper on C9ORF72.

Clinicians and researchers exchanged knowledge about the latest developments in FTD.
Year(s) Of Engagement Activity 2012
 
Description International Consortium on SOD and ALS (Liverpool) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited talk on genetics of MND at International Consortium on SOD and ALS, held at the University of Liverpool.

Shared knowledge to design better-informed experiments to understand the rare, inherited SOD1 form of MND
Year(s) Of Engagement Activity 2012
 
Description International Research Syposium CurePSP (California) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The focus of this symposium, organised by CurePSP, was 'Unlocking the secrets of brain disease'. Researchers, academics and clinical practitioners presented results and debated on specialised discussion panels, including the topics of:
- Genetics and Epigenetics
- Clinical Trials
Year(s) Of Engagement Activity 2015
 
Description Interview for Parkinson's UK 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Prof Morris took part in an interview for Parkinson's UK that was published on their website. The interview was titled 'Genetics and Parkinson's: ask the expert'.
The genetics of Parkinson's is complex and can be confusing. But does that mean people should worry about passing the condition on to their children or consider genetic testing?
Year(s) Of Engagement Activity 2017
URL https://medium.com/parkinsons-uk/genetics-and-parkinsons-ask-the-expert-8d6e13e80d1a
 
Description Interview for Women and Home article: Parkinson's Happens to Young People Too 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Gave an interview for Women and Home for the article 'Parkinson's Happens To Young People Too', published 10 March 2015. The article covered important issues for early onset Parkinson's, such as diagnosis, causes and symptoms.
Year(s) Of Engagement Activity 2015
 
Description Interview with BBC News 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact http://www.bbc.co.uk/news/uk-wales-south-east-wales-15005209

unknown
Year(s) Of Engagement Activity 2011
 
Description LWENC Annual Symposium (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Prof Morris presented a talk and members of the research team attended the symposium titled 'Neurodegeneration: Using genetics to understand pathogenesis and facilitate early diagnosis', hosted by the Leonard Wolfson Experimental Neurology Centre.
Year(s) Of Engagement Activity 2016
 
Description MA Healthcare Parkinson's 2015 conference (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The conference, organised by MA Healthcare in collaboration with the British Journal of Hospital Medicine and the British Journal of Neuroscience Nursing, was attended by a variety of health and social care professionals involved in the management of Parkinson's, including: neurologists, geriatricians, psychiatrists, neurosurgeons, GPs, community mental health teams, nurse specialists, allied health professionals, and trainees. Attendees benefited from presentation and discussion from leading practitioners and researchers, covering topics such as:
- Distinguishing different Parkinsonisms (talk presented by Prof Morris)
- Pre-diagnostic markers of Parkinson's
- Hospitalisation in Parkinson's
- Advances in PET imaging
- Practical strategies for Parkinson's management
- Pharmacological management
- Exercise
- Surgery and Deep Brain Stimulation
- Depression and anxiety
- Palliative care
Year(s) Of Engagement Activity 2015
 
Description MDS-ES Strategic Planning Retreat (Lisbon) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Strategic planning meeting organised by the Movement Disorder Society (European section) held in Lisbon, January 2016
Year(s) Of Engagement Activity 2016
 
Description MND Meeting 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact UK consortium for Chromosome 9

unknown
Year(s) Of Engagement Activity 2012
 
Description MNDA Patient Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Lecture at MNDA patient meeting

unknown
Year(s) Of Engagement Activity 2012
 
Description MSA Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Lecture in MSA Workshop

Led to developing MSA network UK
Year(s) Of Engagement Activity 2011
 
Description Meeting of Society of Physicians in Wales (Port Meirion, Wales) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited speaker, presented a talk 'Neurogenetics in Gwent - Chromosome 9 linked ALS'.

Unknown
Year(s) Of Engagement Activity 2012
 
Description Meeting of the DVLA Honorary Medical Advisory Panel on Driving and Disorders of the Nervous System (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Members of the Honorary Medical Advisory Panel for the DVLA met and discussed:
- Extended period licensing
- Sleep apnoea and impacts
- Regulations regarding isolated seizures
- Visual inattention
- Sudden and disabling events following head injury
Year(s) Of Engagement Activity 2015
 
Description Meeting with CBD Solutions 2016 (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Meeting with Cortico Basal Degeneration Solutions in London to plan future activities and present current research progress.
Year(s) Of Engagement Activity 2016
 
Description Molecular Neurology and Therapeutics course (Cambridge/New York) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited speaker at the Molecular Neurology and Therapeutics course, organised by Wellcome Trust

Taught attendees the latest concepts and methodologies associated with the study of human neurological disorders including Parkinson's disease. Generated discussion about the strengths and weaknesses of the accumulated experimental evidence underlying our current understanding of neurological diseases and how this knowledge can be applied to developing therapeutic approaches.
Year(s) Of Engagement Activity 2008,2009,2010,2011,2012
 
Description Movement Disorders Congress 2016 (Berlin) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Members of the research team attended the Movement Disorders Congress in Berlin and presented posters to communicate research findings.
Year(s) Of Engagement Activity 2016
URL http://www.mdscongress2016.org/Congress-2016.htm
 
Description PD Genetics update for British Movement Disorders Group (BritMODIS) meeting (Birmingham) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The meeting was attended by neurologists, geriatricians and PD nurse specialists, which generated good discussion about multidisciplinary working in Parkinson's Disease.

Sharing information among clinicians.
Year(s) Of Engagement Activity 2014
 
Description PD-STAT/ Cure Parkinson's Trust meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A joint event was organised by the Cure Parkinson's Trust and Plymouth University Clinical Trials unit. The purpose of the meeting was to outline the aims and processes of the PD-STAT (Simvastatin as a neuroprotective treatment for Parkinson's disease) clinical trial to patients and investigators. Members of our research team delivered presentations on linked Parkinson's research studies and made contact with potential participants. This event successfully generated interested in the PD-STAT study and related Parkinson's research studies.
Year(s) Of Engagement Activity 2015
 
Description PRoBaND investigator meeting 2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This meeting with PRoBaND investigators and study teams from across the UK provided the opportunity to discuss analysis plans and present data.
Year(s) Of Engagement Activity 2016
 
Description Parkinson's Conference, MA Healthcare (London) 2016 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Prof Morris presented a talk at the MA Healthcare Parkinson's conference. Audiences had the opportunity to learn about distinguishing the different Parkinsonisms, update their knowledge on treatments and therapies including exercise and deep brain stimulation, explore the potential for novel treatments in Parkinson's, hear a first-hand carer experience of Parkinson's management strategies, and share and exchange ideas with the leading practitioners in the field.
Year(s) Of Engagement Activity 2016
URL http://www.mahealthcareevents.co.uk/public/MAH%20Parkinsons_2016_4pp%20WEB2.pdf
 
Description Parkinson's Disease Nurse Specialist Association conference (Coventry) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presented at the annual Parkinson's Disease Nurse Specialist National two day conference in Coventry. Topics included:
Key Note Speaker - Pain
The Mental Maze
Parkinson's Excellence Network Update
Including underserved and minority groups in Parkinson's (Prof R. Walker)
Dragons Den - Hot topics / Innovations / Hot off the press
Case Presentations - Difficult / Interesting Cases
Things That Go Bump in the night
Neurological Examination
Tip of the Iceberg - Differential Diagnosis
Sticks and Stones - Falls and Fracture Risk
Year(s) Of Engagement Activity 2015
 
Description Parkinson's Disease Society Meetings 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact I meet with PDS group members at PDS meetings and provide updates on our research in PD. This includes local (Newport, Bridgend, Bristol, Camarthen, Bronllys) and national (Stratford 2009 - Younger Parkinson's Network Meeting) meetings

We continue to develop an ongoing relationship with the Parkinson's disease society which leads to further referrals (include volunteer patients) for our research
Year(s) Of Engagement Activity 2006,2007,2008,2009,2010
 
Description Parkinson's Excellence Network 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The UK Parkinson's Excellence Network brings together health and social care professionals to transform care for people affected by Parkinson's. The Network will:
- enable professionals to work together for change
- build an expert workforce
- equip professionals to influence services
- strengthen the voice of people affected

The Network offers resources to support service improvement and engage people affected by Parkinson's, comprehensive information about education and training and collaboration opportunities.
Year(s) Of Engagement Activity 2016
URL http://www.parkinsons.org.uk/professionals/about-excellence-network
 
Description Parkinson's Excellence Network 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Prof Huw Morris presented a talk at the Parkinson's Excellence Network London meeting at the Royal Free Hospital, held on the 28th January 2016. The purpose of this meeting was for the working groups to report back on currently ongoing work and results, as well as identified difficulties and challenges, and to bring the working groups together to discuss further steps.
Attendees included: Patients, Neurologists, Geriatricians, Parkinson's disease nurse specialists (PDNS), Researchers, Psychologists, Psychiatrists, Speech and Language Therapists (SLT), Occupational Therapists (OT), Physiotherapists (PT), Trainees and a Clinical Commissioner.
Year(s) Of Engagement Activity 2016
 
Description Parkinson's Families Project patient meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact A small panel met with a PD patient to go discuss a draft Participant Information Sheet, receiving helpful feedback and opinions from the patient.

The meeting was very productive and generated positive feedback about the draft information sheet. It also provided helpful feedback which influenced later versions of study material.
Year(s) Of Engagement Activity 2014
 
Description Parkinson's Families Projects website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact The PFP website is designed for members of the public, patients and participants to receive essential information about the research project. The website features comments and experiences of patients with Parkinson's, and information on how to get in contact with the research team.
Year(s) Of Engagement Activity 2016
URL http://www.parkinsonsfamiliesprojects.com/
 
Description Parkinson's Masterclass (Bristol) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact Invited speaker at Parkinson's Academy Masterclass, a teaching course for consultants and final year SpR's, GPWSI, Associate Specialists and Staff Grade Physicians.

The course advanced attendees' understanding of Parkinson's disease and related movement disorders through taught sessions, worked examples and mentorship.
Year(s) Of Engagement Activity 2012,2014
URL http://www.parkinsonsacademy.co.uk/
 
Description Parkinson's UK Brain Bank meeting (London) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact Meeting with Parkinson's UK regarding Brain Banking
Year(s) Of Engagement Activity 2015
 
Description Parkinson's UK Introduction to taking part in research leaflet 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Manuela Tan took part in a Parkinson's UK live Q&A panel online. The questions and answers became the raw material that went into our fantastic new resource 'An Introduction to Taking Part in Research'. This is now available on the Parkinson's UK website.
Year(s) Of Engagement Activity 2016,2017
URL https://www.parkinsons.org.uk/content/introduction-taking-part-research-leaflet
 
Description Parkinson's UK Royal College of Physicians Research Lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact This event was organised by Parkinson's UK for patients and the general public. The theme of the presentation was: Parkinson's and Genetics - Unlocking the next generation of treatments. Researchers discussed:
Rare changes to our genes that can cause the condition
How genetics research has progressed in other neurological conditions and how we can emulate this for Parkinson's
The different areas of treatments that are emerging in the field of genetics
Year(s) Of Engagement Activity 2015
 
Description Parkinson's UK Younger Persons Alliance talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Prof Morris delivered a talk at the Parkinson's UK Younger Persons Alliance in October 2017
Year(s) Of Engagement Activity 2017
 
Description Parkinson's UK website information for the Parkinson's Families Project 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Parkinson's UK have provided summary information about the Parkinson's Families Project on their website. Many potential participants have contacted the research team as a result of seeing this page or hearing about the study through Parkinson's UK>
Year(s) Of Engagement Activity 2016
URL https://www.parkinsons.org.uk/content/take-part-parkinsons-research-list-uk-studies
 
Description Positive Steps in Parkinson's 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The purpose of the meeting was to share practical skills that will enable physicians and nurses to deliver the best care for Parkinson's patients. Along with some of the top Parkinson's experts, the group discussed the latest research and techniques, shared best practice and debated interesting case studies.
Year(s) Of Engagement Activity 2016
URL http://www.parkinsonsps.com/home
 
Description Positive Steps in Parkinson's Disease (Manchester) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact Invited speaker, presented talk on 'Top tips for the management of the patient with atypical parkinsonism'.

Unknown
Year(s) Of Engagement Activity 2013
 
Description Poster presentation at Parkinson's UK Research Conference: 100,000 Genomes Project 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Our research nurse presented a poster at the Parkinson's UK Research Conference 2016, presenting recruitment and baseline data from the 100,000 Genomes Project.
Year(s) Of Engagement Activity 2016
 
Description Poster presentation at Parkinson's UK Research conference: the Parkinson's Families Project 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Our research assistant presented a poster at the Parkinson's UK Research Conference 2016, presenting baseline data from the Parkinson's Families Project.
Year(s) Of Engagement Activity 2016
 
Description Presentation at the UCL Basal Ganglia Club (London) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presented talk at Basal Ganglia Club to clinicians and researchers.
Year(s) Of Engagement Activity 2016
 
Description Progressive Supranuclear Palsy Research Event (Durham) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The psychology department at Durham University, in collaboration with South Tees NHS Trust, organised the event for academics, clinicians, patients and carers to discuss research relating to PSP. The all-day event involved presentations from healthcare professionals and the PSP network on topics including what's new in PSP, symptom control, and care planning. There were also workshop sessions to develop new research ideas.
Year(s) Of Engagement Activity 2015
 
Description Queen Square Movement Disorders Centre 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We have recently established the Queen Square Movement Disorders Centre to present a coherent vision of research at Queen Square to participants, patients and the general public. The Movement Disorders Centre at UCL Institute of Neurology is a hub for clinical and research excellence across the spectrum of movement disorders, including Parkinson's, atypical parkinsonian and related syndromes. The centre is led by a core group of 22 world-leading clinicians and researchers who focus their efforts on understanding the causes and biological mechanisms leading to movement disorders and translating this knowledge into novel therapeutic solutions. The centre was established in 2017, and is supported by grants from UCL BRC and Edmond J. Safra Philanthropic Foundation. Dr Maya Bronfeld is employed as a full-time coordinator to set up and coordinate the centre, and liaise with patients, participants and the general public.
Year(s) Of Engagement Activity 2017,2018
 
Description Queen Square Parkinson's disease and movement disorders course (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Members of the research team attended the course 'Genetics and cellular mechanisms of Parkinson's disease and Movement Disorders' held at Queen Square. Topics included: current genetics research, bioinformatic analysis, pathological cases, and treatments.
Year(s) Of Engagement Activity 2016
 
Description Radio interview reviewing Michael J Fox's book 'Lucky Man' 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Media (as a channel to the public)
Results and Impact Radio interview on Practical Neurology with Phil Smith. Discussed early-onset Parkinson's, impact of diagnosis and reception of Michael J Fox's memoir.

Unknown
Year(s) Of Engagement Activity 2014
 
Description Royal College of Psychiatrists - PSP 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited speaker on PSP to Royal College of Psychiatrists

unknown
Year(s) Of Engagement Activity 2012
 
Description Royal Free Hospital Neurosciences meeting (London) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Presented a talk at the RFH Neurosciences meeting to trainees and consultants to promote the 100,000 Genomes Project. This successfully generated interest in the research study and increased the number of local referrals for the project.
Year(s) Of Engagement Activity 2016
 
Description Royal Free Hospital Patient and Public Involvement Group meetings 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Prof Morris and other team members have had regular meetings with the Patient and Public Involvement (PPI) group at the Royal Free Hospital to present research, discuss and review publicity materials and develop the Parkinson's Families Projects website.
Year(s) Of Engagement Activity 2016,2017
 
Description Royal Society of Medicine: Genetics of Movement Disorders (London) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The aim of the meeting was to explain the importance and relevance of medical genetics in the management of patient with movement disorders and to enable the recognition of "common" movement disorders by non-movement disorder specialists. Participants learnt to recognise "common" movement disorders, such as tremor, chorea and ataxia and understood the relevance of medical genetics in the aetiopathogenesis of a variety of disorders associated with abnormal movement. Participants were taught to recognise clinical features, symptoms and signs suggesting a genetic cause for patients with movement disorders, and how to distinguish these from other potential causes. Participants learnt to understand the utility, advantages but also potential difficulties of genetic testing in patients with movement disorders.
Year(s) Of Engagement Activity 2015
 
Description School vist, Henry VIII School, Abergavenny 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Neuroscience day for 6th formers. Viewing of Oliver Sacks's film the Awakenings/ talk/discussion

unknown
Year(s) Of Engagement Activity 2011
 
Description Seminar on Corticobasal degeneration - from molecular mechanisms to potential treatment (Stockholm) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited speaker at seminar titled 'Corticobasal degeneration - from molecular mechanisms to potential treatment', organised by Karolinska Institutet Seminars, CBD Solutions.

Sharing information among researchers
Year(s) Of Engagement Activity 2013
 
Description Seminar on early onset PD at the Walton Centre (Liverpool) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Invited talk on early onset Parkinson's Disease as part of the departmental seminar series.

Share information
Year(s) Of Engagement Activity 2012
 
Description Short Course Queen Square - PSP 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Health professionals
Results and Impact Lecture to health professsionals on short course

unknown
Year(s) Of Engagement Activity 2012
 
Description Society of Physicians in Wales Spring Meeting (Portmeirion) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Meeting of the Society of Physicians in Wales that included sessions on the future of hospitals commission and impact on working practices, and chief resident programme. Attendees shared and furthered their knowledge of acute and general medicine.
Year(s) Of Engagement Activity 2015
 
Description Talk at Independent Doctors Federation Spring Symposium (London) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Prof Morris presented a talk at the Independent Doctors Federation Spring Symposium 'Neurology Today and Tomorrow'.
Year(s) Of Engagement Activity 2016
 
Description Talk at International Parkinson's Disease and Movement Disorders Conference (Sydney) 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The Conference brought together leading academic scientists, researchers and research scholars to exchange and share their experiences and research results about all aspects of Parkinson's Disease and Movement Disorders. It provided a forum for researchers, practitioners and educators to present and discuss the most recent innovations, trends, and concerns, practical challenges encountered and the solutions adopted in the field of Parkinson's Disease and Movement Disorders.

Unknown
Year(s) Of Engagement Activity 2014
 
Description Talk at Southampton 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Delivered a talk at Southampton Hospital
Year(s) Of Engagement Activity 2015
 
Description Talk for Frontotemporal Dementia (FTD) UK meeting 2016 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The day presented exciting updates about current and future research for both frontotemporal dementia (FTD) and overlapping conditions such as progressive supranuclear palsy (PSP) and motor neuron disease (MND). Talks covered: brain imaging techniques, genetics, cell function, drug trials and clinical practice.
Year(s) Of Engagement Activity 2016
URL http://www.ftdtalk.org/ftd-uk-2016-latest-ftd-research-across-uk/
 
Description Talk on early-onset Parkinson's Disease genetics at UK GTN meeting (London) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 65 participants attended the conference, including consultant neurologists, specialist registrars in neurology and interested general paediatricians.

Through the lectures and discussions, it was highlighted that:
• The efficiency of genetic testing could be increased if there was a shift from serial genetic testing to genetic panel testing and potentially in the future to exome-sequencing.
• There was considerable evidence presented that for conditions which had treatment options available, early genetic testing assisted in the early
intervention and management of the condition with better clinical outcomes. However, there remain a significant number of conditions for which a treatment is not available despite access to genetic tests for diagnosis. Nevertheless, often, early diagnosis of a neurological condition through
genetic testing, using the UKGTN testing criteria, may facilitate management interventions such as accurate genetic counselling.
• Additional benefits of genetic testing include early and accurate diagnosis, planning of appropriate clinical care, and advice on prognosis.
• Certain challenges need to be considered in using genetic testing for neurological conditions including access, cost limitations and incidental findings. It is apparent that with discoveries of new genetic contributions to clinical conditions, new clinical pathways and genetic tests will need to be developed. The details of these in turn will need to be disseminated to relevant clinical specialists in a timely manner.

Unknown
Year(s) Of Engagement Activity 2013
 
Description UCL- DZNE- ICM meeting (Paris) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Attended a collaborative meeting between Institute du Cerveau et de la Moelle epiniere (ICM), Deutsches Zentrum fur Neurodegenerative Erkrankungen (DZM) and University College London (UCL). Attendees discussed:
- Translational models of PD
- Neurophysiology, neuropsychology, motor and non-motor symptoms in PD
- Biomarkers, multimodal, methodology of PD
- Brain imaging in PD
- Neuropathology and mechanisms of neurodegeneration in PD
- Genetics and molecular aspects of PD
- Therapeutic trials in PD
Year(s) Of Engagement Activity 2015
 
Description Wellcome Genome Campus Molecular Neurodegeneration course 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact This course provided an overview of the molecular basis of neurodegeneration and the development of treatment strategies to combat neurodegenerative disorders. The programme focused on several disorders including Alzheimer's disease, Parkinson's disease, Fragile X, Spinocerebellar ataxia and amyotrophic lateral sclerosis. There are many parallels between different neurodegenerative disorders and the course will examine the common themes across neurodegenerative processes. Participants gained an insight into the current understanding of both rare and common neurological disorders, the strengths and weaknesses of experimental approaches and evidence, and how this knowledge can be applied to develop therapies. The programme was aimed at individuals working in neurodegenerative research, neurogenetics or translational neuroscience, including clinician scientists, veterinary scientists, PhD students and post-doctoral researchers.
Year(s) Of Engagement Activity 2017
URL https://coursesandconferences.wellcomegenomecampus.org/events/item.aspx?e=606
 
Description Wellcome Trust Molecular Neurodegeneration course 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This highly-regarded course provided a cutting edge examination of the molecular basis of neurodegeneration and the development of treatment strategies. Many parallels are evident between different neurodegenerative diseases and this course highlighted and discussed, in detail, the common themes across neurodegenerative processes. Course participants gained an insight into the current understanding of both rare and common neurological disorders, the strengths and weaknesses of experimental evidence and how this knowledge can be applied to develop therapies.

Course topics included:
• Pathological events in human neurodegeneration
• Development of therapeutic approaches
• Genetic variation in inherited and sporadic disease
• Role of pathogenic proteins
• Use of in vivo models to study neurological pathogenesis
• The application of high content approaches
• Genome editing: methods and applications
Year(s) Of Engagement Activity 2015
 
Description Wellcome Trust advanced course in Molecular Neurology 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Invited speaker to Wellcome Trust Advanced course in Molecular Neurology

unknown
Year(s) Of Engagement Activity 2012
 
Description YPN Magazine 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Piece on our research for Younger Parkinson's Group Newsletter

Not Known
Year(s) Of Engagement Activity 2010
 
Description Younger Parkinsons Network Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Presented on our research to UK Younger onset Parkinson's group Stratford

Not Known
Year(s) Of Engagement Activity 2008
 
Description Younger People Living With Dementia organised by UCL 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact A joint conference organised by University College London and the Journal of Dementia Care was held in November 2015. The focus of the meeting was joined up working between psychiatry, neurology and clinical genetics to improve diagnosis.
Year(s) Of Engagement Activity 2015
URL http://www.careinfo.org/young-dementia-2015/