Prognosis and management of intracanial vascular malformations and non-traumatic intracerebral haemorrhage in adults

Lead Research Organisation: University of Edinburgh
Department Name: Sch of Molecular. Genetics & Pop Health

Abstract

Haemorrhage into the brain - known as intracerebral haemorrhage, or ‘ICH‘ for short - is a devastating condition, which kills one third of people within one month. For at least one quarter of adults with ICH, no cause is ever found. Of the known causes of ICH, abnormal tangles of blood vessels in the brain - known as intracranical vascular malformations, or IVMs for short - are the single most common cause of stroke due to ICH in young adults. IVMs can also leave young people disabled for life and cause epilepsy. The Scottish Intracranial Vascular Malformation Study (SIVMS) is the only study of every type of IVM based on a whole population, following adults from the time they are diagnosed. It will provide information for people with IVMs about their prognosis and the effects of treatment. It will also calculate the financial impact of IVMs and whether they are associated with conventional risk factors for blood vessel diseases.

Technical Summary

Aims:

1. Resume recruitment and continue fellow-up of a unique prospective, population-based study of intracranial vascular malformations (IVMs), which are the commonest cause of haemorrhagic stroke in young adults, as well as a not uncommom cause of epilepsy: the scottish IVM study (SIVMS)

2. Begin a Lothian-wide study of the incidence, Causes and Haemostatic mechanisms in Primary Intracerebral Haemorrhage (LINCHPIN)

3. Complete my training in neurology and, as a consultant, support a clinical service for adults with IVMs in scotland



Objectives:

1. Systematic reveiws of the prognosis and treatment of IVMs and non-traumatic intracerebral haemorrhage

2. Resume recruitment to SIVMS and continue follow-up of the whole cohort to address aetiology, clinical presentation, prognosis, the effects of treatment, and economic burden

3. Form a network of UK AVM specialists, and create a simple database to use for clinical practice and research

4. Community based Lothian-wide cohort study of ICH (LINCHPIN): contemporary incidence, causes, prognosis for death and recurrent ICH, and whether microhaemorrhages & leukoaraiosis on MRI influence outcome



Design/methods: SIVMS is a prospective epidemiological cohort study, based on the whole adult population of Scotland. the study is built oupon successful, multidisciplinary, all-inclusive collaboration between radiologists, neurologists, stroke physicians, neurosurgeons and pathologists, and is steered by a committee representative of all four clinical features at presentation, and annual prospective follow-up data about a huge variety of outcomes and receipt of treatment (with any of surgical excision, endovascular embolisation, and stereotactic radiosurgery). LINCHPIN will be a prospective, community-based cohort study using similar case ascertainment as well as a hot pursuit model involving early clinical assessment, consent, blood sample collection and MRI brain scanning.



Scientific/Medical opportunities: SIVMS is a unique study, poised to address the long-term prognosis of IVMs. ICH and IVMs are of particular interest now because of their detection is likely to be rising with the widespread availability and uptake of brain imaging. Now is the time to assess the influence on ICH incidence and Prognosis of abnormalities such as microhaemorrhages and leukoaraiosis which are increasingly recognised on MRI, as well as recent strategies for secondary prevention of vascular events, and the decline of routine surgical evaculation of ICH.

Publications

10 25 50

publication icon
Pal S (2009) Neurological picture. Double depressor palsy caused by bilateral paramedian thalamic infarcts. in Journal of neurology, neurosurgery, and psychiatry

 
Guideline Title Cerebral arteriovenous malformation
Description AVM review cited by BMJ Best Practice
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact Effective use of diagnostic and therapeutic techniques for brain arteriovenous malformations
 
Description Appointment to American Heart Association guidelines committee for arteriovenous malformations of the brain
Geographic Reach North America 
Policy Influence Type Membership of a guidance committee
Impact Authorship of guidelines that will discourage the use of treatments that I showed in a recent clinical trial and population-based cohort to cause a three-fold increase in the risk of stroke in comparison to no treatment.
 
Description Arthur Fonville prize award
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
Impact The prize was awarded to a student from Edinburgh University who had conducted a pilot study of the Nrf2 pathway after intracerebral haemorrhage by comparing Nrf2 activity in ICH cases vs. controls (who had died suddenly of causes unrelated to stroke). He demonstrated that the Nrf2 pathway was significantly less active in cases compared to controls. This pilot study contributed to the successful funding application for a programme grant.
URL https://www.ed.ac.uk/clinical-brain-sciences/news/news-jul-dec-2018/winners-arthur-fonville-award-20...
 
Description British Neurological Surveillance Unit
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Guideline Title European Stroke Organisation (ESO) guidelines for the management of spontaneous intracerebral hemorrhage
Description Citation in European Stroke Organisation (ESO) guidelines for the management of spontaneous intracerebral hemorrhage
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact Importance of avoidance of haemostatic drugs in spontaneous ICH not associated with antithrombotic drug use
 
Guideline Title Cavernoma-related epilepsy: Review and recommendations for management - Report of the Surgical Task Force of the ILAE Commission on Therapeutic Strategies
Description Citation in International League Against Epilepsy guidelines
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact The risk of epilepsy after a first seizure relating to a cavernous malformation is so high that anti-epileptic drugs should be started without waiting for the second seizure
 
Guideline Title Clinical Practice Guideline for the Management of Intracranial Aneurysms
Description Citation in clinical practice guideline
Geographic Reach Asia 
Policy Influence Type Citation in clinical guidelines
Impact Avoidance of use of magnesium treatment
URL http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4239410
 
Description Department for Transport DVLA committee
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
Impact My study was asked to provide data to inform the DVLA about their regulations on fitness to drive
 
Description European guidelines on intracerebral haemorrhage
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guidance committee
Impact Guidance to practitioners based on the best available evidence in clinical trials.
URL http://onlinelibrary.wiley.com/store/10.1111/ijs.12309/asset/ijs12309.pdf?v=1&t=i20li2eq&s=ec8a26db9...
 
Description Project cited as an example of best practice in "A Manual for Caldicott Guardians" (Copyright 2017 UK Caldicott Guardian Council)
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact SAIVMs was cited by our local Caldicott Guardian as an example of audit and research which is integral to high quality prevention, treatment and care, and which has been done in "the right way."
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/581213/cgmanual.pdf
 
Description RCP London working party on research ethics
Geographic Reach Multiple continents/international 
Policy Influence Type Participation in advisory committee
Impact Clear gudance on research ethics
 
Description Revision of the Adults With Incapacity (Scotland) Act 2000
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Gave evidence to a government review
Impact As a result of the difficulties I experienced with gaining research ethics committee approval for my research with the only research ethics committee allowed to adjudicate it in Scotland, I campaigned for applicants to have the right to appeal. The Government subsequently consulted on this change, and it looks likely to be progressing.
 
Description Stereotactic radiosurgery alone or combined with embolization for brain arteriovenous malformations: a systematic review and meta-analysis
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in systematic reviews
 
Description Stroke Research Network Prevention Clinical Studies Group
Geographic Reach National 
Policy Influence Type Participation in advisory committee
Impact I was elected to the UK Stroke Research Network Prevention Clinical Studies Group to influence which research projects should be conducted in the UK
 
Description Synopsis of Guidelines for the Clinical Management of Cerebral Cavernous Malformations: Consensus Recommendations Based on Systematic Literature Review by the Angioma Alliance Scientific Advisory Board Clinical Experts Panel
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
 
Description Tailored talks for vascular malformations
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact RASS to add detail
 
Description A digital archive and web-based reviewing system for the imaging of intracranial vascular malformations: a tool to measure observer variation
Amount £41,463 (GBP)
Funding ID CZG/2/265 
Organisation Chief Scientist Office 
Sector Public
Country United Kingdom
Start 01/2006 
End 12/2006
 
Description A research dedicated 3 Tesla Magnetic Resonance (MR) Scanner
Amount £300,000 (GBP)
Funding ID R380R/1114 
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2016 
End 08/2016
 
Description BHF clinical research training fellowship
Amount £168,553 (GBP)
Funding ID FS/17/53/33119 
Organisation British Heart Foundation (BHF) 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2018 
End 12/2020
 
Description CRASH-2 (Clinical Randomisation of an Antifibrinolytic in Significant Haemorrhage) IBS (Intracranial Bleeding Study): the effect of tranexamic acid on intracranial bleeding among CRASH-2 trial participants
Amount £109,325 (GBP)
Funding ID 09/102/01 
Organisation National Institute for Health Research 
Department Health Technology Assessment Programme (HTA)
Sector Public
Country United Kingdom
Start 01/2009 
End 09/2009
 
Description Cavernomas A Randomised Effectiveness (CARE) pilot trial to address the effectiveness of active treatment (with neurosurgery or stereotactic radiosurgery) versus conservative management in people with symptomatic brain cavernoma
Amount £973,836 (GBP)
Funding ID NIHR128694 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 09/2020 
End 08/2023
 
Description Long-term outcomes in unruptured brain arteriovenous malformation patients
Amount $675,224 (USD)
Funding ID R01NS099268 
Organisation National Institutes of Health (NIH) 
Department National Institute of Neurological Disorders and Stroke (NINDS)
Sector Public
Country United States
Start 05/2017 
End 04/2022
 
Description MRC / Stroke Association clinical training fellowship (Neshika Samarasekera)
Amount £202,356 (GBP)
Funding ID G0900428 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 02/2010 
End 02/2013
 
Description MRC / The Stroke Association programme grant (Capital Investment in Human Tissue Banking and Linked Data in Partnership with Charities)
Amount £559,445 (GBP)
Funding ID MR/R014140/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 09/2017 
End 12/2021
 
Description MRC senior clinical fellowship: Cerebral amyloid angiopathy and intracerebral haemorrhage: community-based cohort study, biobank, and record linkage
Amount £2,105,368 (GBP)
Funding ID G1002605 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 08/2011 
End 07/2016
 
Description Magnetic Resonance Imaging of Lifecourse Influences on Brain Health and Disease.
Amount £600,000 (GBP)
Funding ID 104916 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2015 
End 12/2019
 
Description Microbleeds and genetic risk factors to predict the risk of intracranial haemorrhage in patients treated with anticoagulation following cardioembolic stroke due to AF
Amount £939,718 (GBP)
Funding ID TSA/BHF 2009/01 
Organisation British Heart Foundation (BHF) 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2011 
End 05/2016
 
Description PATCH (Platelet Transfusion in Cerebral Haemorrhage)
Amount £86,985 (GBP)
Funding ID Res10 
Organisation Chest Heart & Stroke Scotland 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2010 
End 01/2016
 
Description Part-funding for a research-dedicated 3 Tesla Magnetic Resonance (MR) Scanner
Amount £300,000 (GBP)
Funding ID R380R/1114 
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 12/2015 
End 12/2015
 
Description Pathomolecular mechanisms of intracerebral haemorrhage: functional analysis of collagen IV variants.
Amount £705,869 (GBP)
Funding ID MR/R005567/1 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 08/2018 
End 12/2021
 
Description The Stroke Association Haemorrhagic Stroke Priority Programme Award
Amount £449,482 (GBP)
Funding ID TSAPPA2017/01 
Organisation Stroke Association 
Sector Charity/Non Profit
Country United Kingdom
Start 04/2018 
End 03/2022
 
Description The genetic factors predisposing to brain arteriovenous malformations (BAVMs), and their effect on BAVM presentation, prognosis and response to treatment
Amount £93,000 (GBP)
Funding ID TSA/2006/13 
Organisation Stroke Association 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2006 
End 12/2007
 
Description Validation and phenotyping of stroke outcomes in UK Biobank
Amount £167,655 (GBP)
Organisation UK Biobank 
Sector Charity/Non Profit
Country United Kingdom
Start 12/2011 
End 12/2013
 
Title Biobank of adults with intracranial vascular malformations 
Description Clinical, radiological, and DNA repository from adults with intracranial vascular malformations 
Type Of Material Biological samples 
Year Produced 2007 
Provided To Others? Yes  
Impact Multiple publications 
 
Title Biobank of data, imaging, and tissue from patients with intracerebral haemorrhage 
Description Community-based study of adults with intracerebral haemorrhage 
Type Of Material Biological samples 
Provided To Others? No  
Impact Collaboration with MRC Cognitive Function and Ageing Study in place for unique future analyses 
 
Title Web-based imaging review system 
Description Web-based system for review and data collection from a variety of neuroradiological imaging techniques 
Type Of Material Improvements to research infrastructure 
Provided To Others? No  
Impact Data collection to validate patients included in a population-based disease register, and collect data for a study on inter-rater reliability 
 
Description Collaboration with Boston Haemorrhagic Stroke Research Programme 
Organisation Harvard University
Department Department of Neurobiology
Country United States 
Sector Academic/University 
PI Contribution I have generated the hypotheses, and designed the research programme
Collaborator Contribution Their collaboration has underpinned the development of my senior clinical fellowship application to MRC
Impact MRC senior clinical fellowship application
Start Year 2010
 
Description Collaboration with Institute of Neurology 
Organisation University College London
Department Institute of Neurology
Country United Kingdom 
Sector Academic/University 
PI Contribution Intellectual input
Collaborator Contribution Collaboration on current studies and obtaining funding for future research studies,
Impact Co-applicant on successful programme grant application to the BHF
Start Year 2009
 
Description Collaboration with LSHTM 
Organisation London School of Hygiene and Tropical Medicine (LSHTM)
Department Faculty of Epidemiology and Population Health
Country United Kingdom 
Sector Academic/University 
PI Contribution Design of a sub-study, successful application for HTA funding, and analysis
Collaborator Contribution Sub-study of a large, international randomised controlled trial
Impact Paper published in BMJ. Springboard to further grant application, in collaboration with University of Nottingham
Start Year 2008
 
Description Collaboration with Lille haemorrhagic stroke group 
Organisation Lille University Hospital
Department Department of Neurology
Country France 
Sector Hospitals 
PI Contribution Supervision of a postgraduate student, sharing data, leading on analyses
Collaborator Contribution Several publications using shared data
Impact Several publications
Start Year 2006
 
Description Collaboration with Mario Negri Institute for Pharmacological Research 
Organisation European Institute of Oncology (IEO)
Country Italy 
Sector Academic/University 
PI Contribution Trial steering committee member responsible for contributing to trial design of Propranolol in Cerebral Cavernous Malformation (Treat_CCM) (NCT03589014)
Collaborator Contribution Conduct of randomised trial
Impact Protocol publication pending
Start Year 2018
 
Description Collaboration with the MRC Cognitive Function and Ageing Study 
Organisation University of Cambridge
Department Department of Public Health and Primary Care
Country United Kingdom 
Sector Academic/University 
PI Contribution I have designed the study that we will do in collaboration.
Collaborator Contribution It is a globally unique comparison group for one of my research projects
Impact None so far
Start Year 2010
 
Description Collaboration with the Microbleed Study Group 
Organisation National Center for Biotechnology Information (NCBI)
Country United States 
Sector Public 
PI Contribution Contribution to writing a manuscript
Collaborator Contribution Culminated in publication
Impact Publication of review in Lancet Neurology, Pub Med ID 19161908
Start Year 2007
 
Description Collaboration with the Oxford Vascular Study 
Organisation Oxford University Hospitals NHS Foundation Trust
Department NIHR Oxford Biomedical Research Centre
Country United Kingdom 
Sector Academic/University 
PI Contribution We led on the data analysis
Collaborator Contribution Joint analysis of our two cohorts, resulting in a publication in Brain
Impact Publication in Brain, Pub Med ID 19042932
Start Year 2007
 
Description Collaboration with the UCL INSTITUTE OF NEUROLOGY stroke research centre 
Organisation University College London
Country United Kingdom 
Sector Academic/University 
PI Contribution Intellectual contribution to successful grant applications: The Stroke Association Priority Programme Award: Prevention Of Hypertensive Injury to the Brain by Intensive Treatment after IntraCerebral Haemorrhage (PROHIBIT ICH): a pilot randomized trial of home telemetry-guided treatment. Ref. PPA2015/04 and Stroke Association/British Heart Foundation Joint Programme Grant: Microbleeds and genetic risk factors to predict the risk of intracranial haemorrhage in patients treated with anticoagulation following cardioembolic stroke due to AF. Ref. TSA/BHF 2009/01
Collaborator Contribution Led grant applications
Impact Several publications
Start Year 2009
 
Description Member of The Stroke Association's James Lind Alliance Priority Setting Partnership for stroke 
Organisation Stroke Association
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Input into design and conduct
Collaborator Contribution Organisation and funding
Impact Top ten priorities for stroke research pending
Start Year 2019
 
Description PATCH collaboration with AMC 
Organisation Academic Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution Membership of trial steering committee
Collaborator Contribution Lead on randomised controlled trial
Impact Successful Chest Heart & Stroke Scotland project grant application
Start Year 2009
 
Description UCSF Center for Cerebrovascular Research 
Organisation University of California, San Francisco
Department Center for Cerebrovascular Research
Country United States 
Sector Academic/University 
PI Contribution Intellectual contribution to design of a randomised controlled trial
Impact Applying to NIH as co-PI for funding of a randomised trial
Start Year 2010
 
Description USA Angioma Alliance Scientific Advisory Board 
Organisation Angioma Alliance
Country United States 
Sector Charity/Non Profit 
PI Contribution Advice on scientific strategy. Authoring of guidance documents
Collaborator Contribution Access to network of researchers and opportunity to create consensus guidelines
Impact Publication of guidelines for the definition of haemorrhage from cerebral cavernous malformations
Start Year 2007
 
Description 2011 CCM workshop 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation of the first clinical guidelines for adults with cavernous malformations

Disseminated at Society of British Neurological Surgeons conference and prompted an invitation to speak at their subsequent meeting
Year(s) Of Engagement Activity 2011
 
Description AGP Alliance representing BASP 
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 Rustam to complete
Year(s) Of Engagement Activity 2020
URL https://www.basp.org/wp-content/uploads/2020/11/AGP-Alliance-position-paper-27-October-2020.pdf
 
Description British Neurosurgical Research Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact CARE trial output
Year(s) Of Engagement Activity 2019
 
Description Clinical research fellow shortlisted for Max Perutz writing award 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The clinical research fellow who I mentored and supervise on an MRC clinical research training fellowship was shortlisted for the MRC's Max Perutz writing award

Piece disseminated to participants in our research
Year(s) Of Engagement Activity 2011
 
Description Cochrane Stroke Group Editorial Board meeting 
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 Presented recently-published findings by Tamborska et al on randomised trial quality
Year(s) Of Engagement Activity 2018
 
Description Congress of the Neurological Association of South Africa 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Increasing value and reducing waste in neurosciences research (Ethics)
Year(s) Of Engagement Activity 2020
URL https://www.nasacongresses.co.za/index.php/programme
 
Description Congress of the Neurological Association of South Africa 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Incidental findings on brain imaging: is prevention better than cure?
Year(s) Of Engagement Activity 2020
URL https://www.nasacongresses.co.za/index.php/programme
 
Description Congress of the Neurological Association of South Africa 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Antithrombotic drugs after stroke due to intracerebral haemorrhage: should we worry about bleeding or clotting?
Year(s) Of Engagement Activity 2020
URL https://www.nasacongresses.co.za/index.php/programme
 
Description European Stroke Organisation Stroke Research workshop - virtual lecture on 'Should your study be an observational study or a clinical trial?' 
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 Internationally recognised organisation engaging with stroke professionals worldwide. 2 day virtual event for all professional practitioners interested in furthering their knowledge of stroke and stroke research. Delivered with an Edinburgh faculty.
Year(s) Of Engagement Activity 2021
URL https://eso-stroke.org/events/eso-edinburgh-stroke-research-workshop-virtual-for-2021/
 
Description Event for participants in SAIVMs 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Whole day event for patients participating in my population-based study, involving patient support organisations

Further fundraising activities
Year(s) Of Engagement Activity 2010
 
Description How to be a good chief investigator 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact How to be a good chief investigator
Year(s) Of Engagement Activity 2019
 
Description Media coverage of Edinburgh CAA criteria 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Combined blood and brain tests predict repeat stroke risk
Year(s) Of Engagement Activity 2018
URL http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-42636192
 
Description Medical Research Symposium for students and foundation doctors 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Medical research symposium for students and foundation doctors
Year(s) Of Engagement Activity 2019
 
Description National Institute for Health Research 
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 Membership of a peer review committee
Year(s) Of Engagement Activity 2018
 
Description Neurosurgery department, Essen, Germany 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Discussion of the design of a randomised controlled trial that could be run in Germany
Year(s) Of Engagement Activity 2017
 
Description Participant newsletters 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact Annual newsletters to participants

Improved participant satisfaction
Year(s) Of Engagement Activity 2006,2007,2008,2009,2010,2011,2012,2013,2014,2015,2016
 
Description Presentation to Kings College Hospital London on 'Cracking the Cavernoma Conundrum' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact Rustam to complete
Year(s) Of Engagement Activity 2020
 
Description Presentations to patient organisations 
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 Patients, carers and/or patient groups
Results and Impact Patient education and information

Charitable funding (£20,000) was raised for the patient organisation as a result of my involvement.
Year(s) Of Engagement Activity 2007,2008,2009,2010,2011,2012,2013,2014,2015,2016
 
Description RUSH patient advisory group meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Rustam to complete
Year(s) Of Engagement Activity 2020
URL https://www.ed.ac.uk/clinical-brain-sciences/research/rush-research-group-overview
 
Description SAIVMs open day 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact 150 study participants attended an open day to hear the results of the research and meet patient support groups

None
Year(s) Of Engagement Activity 2010
 
Description Session organiser and speaker for the British Cardiovascular Society Annual Conference, Manchester 
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 "Dilemmas in investigation and management of embolic stroke"
Year(s) Of Engagement Activity 2017
 
Description Speaker - From Holmes to House - 500 years of the diagnostic neurologist 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact "The risks of over-diagnosis in neurology - a 21st century ill?"
Year(s) Of Engagement Activity 2018
URL https://www.rcplondon.ac.uk/events/holmes-house-500-years-diagnostic-neurologist
 
Description Speaker at BRAINSTORM meeting 
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 Talk about trial results to interventional neuroradiologists
Year(s) Of Engagement Activity 2017
 
Description Speaker at the 39th Edinburgh Clinical Neurology Course 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact "Bleeding in and around the brain"
Year(s) Of Engagement Activity 2017
 
Description Speaker at the Edinburgh Stroke Winter School 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact "Is it worth doing observational research?"
Year(s) Of Engagement Activity 2018
URL https://www.ed.ac.uk/clinical-brain-sciences/postgraduate-training/edinburgh-stroke-winter-school
 
Description Stroke 5-nations Covid 19 meetings 
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 5 nation meeting every week to discuss the impact of Covid 19 on the stroke service nationally across the UK.
Year(s) Of Engagement Activity 2020
 
Description Talk about observational research vs. randomised trials to future stroke researchers 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Talk about observational research vs. randomised trials to future stroke researchers
Year(s) Of Engagement Activity 2020
URL https://www.ed.ac.uk/clinical-brain-sciences/postgraduate-training/eso-edinburgh-stroke-research-wor...
 
Description Talk on management of intracranial vascular malformations 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 40 doctors attended my talk, which influenced their management of patients

I was invited to participate in an American Heart Association guidelines panel
Year(s) Of Engagement Activity 2014
 
Description Talk to the Glasgow Neuro Society on including academia at the arly atage of your medical career 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Undergraduate students
Results and Impact A talk to interested neuro students on the benefits of inclusing academia in their early careers
Year(s) Of Engagement Activity 2021
URL https://www.glasgowneuro.co.uk/
 
Description UK Neurovascular group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation of the breaking results of the ARUBA randomised controlled trial.

Practice-changing implications of the results
Year(s) Of Engagement Activity 2013
URL http://www.arubastudy.org
 
Description UK Stroke Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact What's hot and what's next? RESTART
Year(s) Of Engagement Activity 2019
 
Description UK Stroke Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A rush of blood to the head: update on acute intracerebral haemorrhage in 2019
Stop the clots: State of the art in vascular secondary prevention after intracerebral haemorrhage
Year(s) Of Engagement Activity 2019
 
Description Written information leaflets for patient support organisations 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact The first patient information leaflets for patients in the UK with this condition

Patients better informed. Grants awarded from the patient support organisation to underpin further similar activities
Year(s) Of Engagement Activity 2008,2009,2010,2011,2012,2013,2014