IGMM Core Award

Lead Research Organisation: University of Edinburgh

Abstract

Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.

Technical Summary

IGMM Core funding – In addition to funding for Cross-Disciplinary Fellowships, core funding for the QQR period will support the IGMM’s seminar and external communication & engagement programmes to enable the IGMM to link up with external researchers and promote the scientific outputs of the IGMM. The award will also support completion of existing PhD studentships, Scientific Advisory Board meetings and strategic staff meetings.

Publications

10 25 50
 
Description "Syncrasy" contemporary exhibition at the Edinburgh Science Festival 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact The Syncrasy Exhibition, Sat 26 June - Sun 12 Sept 2021: 650 unique visitors across the 11 weeks

Syncrasy was a contemporary art exhibition co-curated by Summerhall and ASCUS Art & Science. "We began as part of the body" by Beverley Hood, was a series of works that played with scale to capture the fleeting lifespan of living cells. This was one of three exhibitions by artists working across the fields of art, science and technology that reflected on complex human and ethical questions about our relationship between the body, science and technology. Inspired by the eczema genetic research laboratory of Prof Sara Brown, artist Beverley Hood's experimental exhibition told a story from the perspective of artificial skin cells, following the cells' three week long 'in-vitro' life, from operating theatre to lab and finally to disposal. These works were presented as a video projection, 3D prints and Augmented Reality App, alongside science engagement and historical materials. It attracted 650 visitors.
Year(s) Of Engagement Activity 2021
URL https://www.summerhall.co.uk/visual-arts/we-began-as-part-of-the-body
 
Description "We began as part of the body", Linked to Syncrasy, a contemporary exhibition in Summerhalll, for the Edinburgh Science Festival 
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 Co-presented talk on 26 June 2021, 4-5pm: Summerhall & ASCUS YouTube combined: 88 views

Discover how bodies are imagined, visualised and made audible using bio-medical data. In this recorded conversation event, hear how Beverley Hood created the We began as part of the body artwork in response to dermatologist Prof Sara Brown's research laboratory, using microscopy, 3D modelling, speech synthesis, and immersive technologies.

Prof Sara Brown co-presented a talk with collaborating artist Beverley Hood, for the Syncrasy exhibition held in Summerhall as part of the Edinburgh Science Festival.
 
Syncrasy is a contemporary art exhibition co-curated by Summerhall and ASCUS Art & Science. Inspired by the eczema genetic research laboratory of Prof Sara Brown, artist Beverley Hood's experimental exhibition tells a story as seen from the point of view of the artificial skin cells, leading you through the cells journey, during their short, precious, three week long 'in-vitro' life from operating theatre to lab, and finally to disposal. These works are presented as a video projection, 3D prints and Augmented Reality App, alongside science engagement and historical materials
Year(s) Of Engagement Activity 2021
URL https://www.eventbrite.co.uk/e/we-began-as-part-of-the-body-beverley-hood-artist-talk-tickets-153981...
 
Description AGS Family Meeting with Prof Yanick Crow 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Weds 12 January 2022, 4-5.30pm: AGS Family Meeting

AGS Family Meeting - online, hosted by Prof Yanick Crow
1. Professor Yanick Crow, Clinical Geneticist and Researcher, MRC HGU, IGC
2. Dr Eslam Al-Abadi, Consultant Paediatric Rheumatologist and Researcher, Birmingham Women's and Children's Hospital
3. Tina Nesbitt, Founder of the AGS UK Patient Organisation

Online audience: 14
Year(s) Of Engagement Activity 2022
URL http://agsuk.org/agsnetwork-home/ags-online-family-update-2022/
 
Description ASCUS Sci-Art Pairing - Epigenomes & genes 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact 19 May 2021: Danni Gadd, PhD Student, Riccardo Marioni RG, CGEM - ASCUS Sci-Art Pairing with Kym Walker Artist

CGEM Researcher and an Artist were paired and each created Sci-Art pieces, inspired by Epigenomes & genes, that will be displayed within the institute

Danni Gadd's piece "Connected, Genomes" reflects her research on epigenomes and genes, uncovering the depths of connectivity between our genomes, our environments and our health

Kym Walker's piece "Double, Complex" reflects biological complexity, where crucial elements of life are hidden & links to Lockdown that's restricted human connections whilst increasing reliance on the digital, virtual world
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/centre-genomic-medicine/news-events/latest-news/a-collaboration-of-art-and-scie...
 
Description BioPodEdinburgh - UoE PhD students Podcast 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact 8 June 2021: BioPod Podcast

BioPOD is the official podcast of the School of Biological Sciences, produced and presented by enthusiastic student volunteers.
Dr Thomas Christie Williams discussing COVID variants and how our vaccines can cope with them.

543 followers
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/biology/news-events/biopod
 
Description Bowel Cancer Awareness Month Twitter Campaign 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact April 2021: Bowel Cancer Awareness Month - CRUK Edinburgh Centre Twitter Campaign

To raise awareness of the Bowel Cancer research undertaken within the Institute and the Cancer Centre
Featuring
Prof Ian Tomllinson
Prof Evropi Theodoratou
Prof Malcolm Dunlop
Dr Susan Farrington
Dr Farhat Din
Dr Kevin Myant
Dr Lesley Stark
Year(s) Of Engagement Activity 2021
 
Description Brain Cancer Research - Live from the Lab 
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 19 November 2021, 5-6pm: Brain Cancer Research - Live from the Lab

Professor Neil Carragher's research team ran the first ever virtual lab tour held at the Cancer Centre, highlighting their research, as part of the Brain Tumour Award funded by Cancer Research UK in partnership with The Brain Tumour Charity.
Online attendees were able to meet the researchers virtually and find out about the best combination therapies against aggressive brain tumours.
Prof Neil Carragher provided an overview of the project
Dr Richard Elliott revealed the science behind drug screening
Dr Laura McVeigh showed how drug combinations are tested with patient-derived cells
Dr Mitch Foster described precision medicine approaches in preventing recurrence of the disease.
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/cancer-centre/news-and-events/latest-news/live-from-the-lab-nov2021?s=03
 
Description CMVM EMS Instagram Takeover 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Undergraduate students
Results and Impact Personalized & Precision Neoantigen Therapeutics in Cancer - Edinburgh Medical School Instagram Takeover
Year(s) Of Engagement Activity 2021
 
Description CMVM Research Insights: Covid-19 - Weathering the Storm 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 3 March 2021, 4.30pm: CMVM Research Insights: Covid-19 - Weathering the Storm
Professor David Porteous and Dr Chloe Fawns-Ritchie, Research Assistant, Generation Scotland

The CovidLife team captured people's experiences of lockdown through surveys
CovidLife
TeenCovidLife
RuralCovidLife

All of our lives changed in March 2020 when we were asked to stay in our homes to try to stop the spread of Covid-19. Every single person in Scotland was in the same storm but not in the same boat. Professor David Porteous and the Generation Scotland team spent 2020 capturing people's experiences of lockdown through surveys called CovidLife, TeenCovidLife and RuralCovidLife. They've gathered together the data people of Scotland were willing to share to build an overall picture of each of our own little boats and what that has meant for people overall.
Online Audience: 171 registered
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/medicine-vet-medicine/news-events/college-events/research-insights/winter-20-21...
 
Description CRUK Interview with Dr Mitch Foster about World Cancer Research Day 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact Fri 24 September 2021

CRUK Interview with Dr Mitch Foster about World Cancer Research Day for the CRUK internal staff newsletter. Dr Mitch Foster ECAT Research Fellow, CRUK Edinburgh Centre & Centre for Clinical Brain Sciences.

Readership: CRUK Employées:
Pre-Pandemic 4,600
Pandemic fundraising crisis - reduced to 4,000
Year(s) Of Engagement Activity 2021
 
Description DecodeME study was presented to Sajid Javid MP, Secretary of State for Health and Social Care, DoHSC and NIHR officials 
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 Tuesday 16 November 2021

At the request of the Secretary of State for Health and Social Care, Prof Chris Ponting introduced the DecodeME study to Sajid Javid MP, DoHSC and NIHR officials on 16 November 2021

The Secretary of State subsequently acknowledged via Twitter that there had been a "real lack of research [on ME/CFS] over many years". A further roundtable meeting was suggested.
Year(s) Of Engagement Activity 2021
URL https://twitter.com/sajidjavid/status/1461685112416919560?s=20
 
Description DecodeME webibar - Launch event 
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 Thurs 27 Jan 2022, 10-11am: DecodeME launch webinar 

DecodeME opened for first participants in January. Phase 1 opened on January 31 for around 550 people.
Recruitment happened in two phases.
1. Over 50 people with severe ME/CFS were invited to take part. completing the questionnaire on paper or via telephone, with support from the 25% ME Group
2. Up to 500 of online participants, chosen randomly, were invited to take part in the study online
Year(s) Of Engagement Activity 2022
URL https://www.decodeme.org.uk/important-update-first-look-at-spit-kit/
 
Description DecodeME webinar - Patient and Public Involvement (PPI) 
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 11 November 2021, 4 - 5pm: DecodeME PPI webinar
Zoom and Facebook Live

DecodeME Patient and Public Involvement (PPI)
Sonya Chowdhury
Chris Ponting
Sian Leary
How the study is putting people with ME/CFS and their carers at its heart
TOTAL ONLINE AUDIENCE: 3,741
738 views on YouTube
40 listens to soundcloud audio recording
Facebook webinar views: 1,601
Facebook live:
164 peak live viewers
3-Second Video Views: 488
1-minute video views: 251
Zoom Live:
2003 registrations for Zoom webinar & 459 watched live
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=K19z6JBsKUM
 
Description DecodeME PPI webinar - Research Programme Update 
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 6 August 2021, 3-4pm: DecodeME Update event 

Zoom and Facebook Live
Sonya Chowdhury
Chris Ponting

1,458 YouTube views.
1.5k views on Facebook video.

Live Facebook:
46 peak viewers.
3-Second Video Views: 207
1-minute video views: 66

TOTAL ONLINE ENGAGEMENT: 3,297
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=5MRVJAHg-7o
 
Description DecodeME PPI webinar - Study Recruitment Process 
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 April 2021, 6pm
DecodeME Patient - describing the Study Recruitment Process
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=ASDXDhgYHyY
 
Description Dr Cameron Wyatt Shortlisted for Annual Understanding Animal Research Openness Awards  
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 Mon 6 December 2021: Dr Cameron Wyatt Shortlisted for Annual Understanding Animal Research Openness Awards 

The annual Understanding Animal Research Openness Awards present awards for excellent, open communications around animal research, which others can learn from as examples of best practice. The University of Edinburgh submitted one nomination for an activity that illustrated leadership or innovation in moving openness around animal research forwards - Public engagement activities - Dr Cameron Wyatt, Zebrafish Facility Tours for Science Insights & tour video shared on IGC Virtual Visit.

"We are incredibly proud of Cameron's passion and commitment to ensuring that the importance of our animal research is recognised within the University and amongst our stakeholders and the public. Cameron is warm, accessible and engaging and his enthusiasm means that he is willing to be bold and quietly courageous - always open to questions about his work and our research. We could only rapidly pivot to delivering Science Insights online due to Cameron's willingness to make his tour work online and this then allowed us to harness social media effectively when people began engaging more extensively online. Cameron's passion, especially in engaging school pupils, has clearly encouraged young people from across Scotland to think differently about animal models like zebrafish and why they are important to our biomedical and genetic research."
Year(s) Of Engagement Activity 2021
URL https://concordatopenness.org.uk/openness-awards#:~:text=Understanding%20Animal%20Research%20launche...
 
Description Edinburgh Medical School - EMS Instagram Takeover 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact 23 April 2021: Kamila Pawlicka, CRUK EC - CMVM EMS Instagram Takeover

Kamila Pawlicka, 3rd year PhD student at our CRUK Edinburgh Centre, took over the College's EMS Instagram @EdinburghMedicalSchool for the day, sharing insights on life in the lab & her research on Personalized & Precision Neoantigen Therapeutics in Cancer
Year(s) Of Engagement Activity 2021
URL https://instagram.com/edinburghmedicalschool/
 
Description Edinburgh and Lothians PPI Network Launched in March 2021 
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 March 2021: Edinburgh and Lothians PPI Network Launched

The Network aims to develop better connections and collaborations for the community of people supporting and delivering PPI across UoE and NHS Lothian. The purpose of the Network is multifarious, with the intention that we can support the differing needs of network members.   The network aims to build capacity for PPI and provide a forum for support, troubleshooting, learning and, collaboration.
 
To support colleagues working in formal PPI posts and those undertaking PPI as part of clinical or research posts
To provide a network to help problem solve and share best practice
To create awareness and share opportunities for training and collaboration
To share resources where possible
To collaborate on developing and delivering PPI activities
Year(s) Of Engagement Activity 2021
 
Description Ethics in Research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Undergraduate students
Results and Impact July 2021: Dee delivered presentation on 'Ethics in Research' to International Students Summer School, Centre for Open Learning

Talk presented to University of Edinburgh International Students Summer School by Dee Davison, IGC Public Engagement Manager

Delivered twice to
Summer 2021 English Language Pre-Sessional 
Summer 2021 English Language Pre-Sessional for the Nanjing Medical University Group
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/lifelong-learning
 
Description Generation Scotland presented on RuralCovidLife at the Scottish Rural Parliament 2021, hosted by Scottish Rural Action 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact 16 March 2021, 10.30-12:00: Ali Forbes, Generation Scotland presented on RuralCovidLife at the Scottish Rural Parliament 2021, hosted by Scottish Rural Action

Rural Mental Health and WellbeingDrawing on emerging Scottish research, this session debates action to promote mental health and wellbeing in rural and island communities with a particular focus on reaching out to and including marginalised groups

Nearly 800 people signed up to attend the 15 online sessions over 5 days, making it the biggest Scottish Rural Parliament ever
Year(s) Of Engagement Activity 2021
URL https://www.sra.scot/our-work/about-scottish-rural-parliament
 
Description Genetics Unzipped podcast "Six toed cats & cyclops lambs - The story of the Sonic Hedgehog Gene" 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact 1 July 2021: IGC sponsored a episode of Genetics Unzipped - the Genetics Society's podcast series:  Six toed cats & cyclops lambs - The story of the Sonic Hedgehog Gene

Kat Arney and Professor Bob Hill, MRC HGU, IGC explored the fascinating story and science behind the Sonic Hedgehog gene.

In this podcast, supported by the Institute of Genetics and Cancer at the University of Edinburgh, Professor Bob Hill from the MRC HGU, tells the story of the Sonic Hedgehog gene. From six-toed cats to cyclops lambs, the Sonic Hedgehog gene has a fascinating history, as well as a whole bunch of interesting science behind it.

Regular listenership: 5,000-8,000 worldwide
Weekly hits on the RSS feed: 15,000
This episode had 343 plays on Spotify
Website: 4,100 visits to the main page for this episode
Year(s) Of Engagement Activity 2021
URL https://geneticsunzipped.com/blog/2021/7/1/s413-six-toed-cats-and-cyclops-lambs-the-story-of-sonic-h...
 
Description Genetics Unzipped podcast: The eyes have it: From genetics to gene therapy - podcast 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Thurs 2 July 2020: MRC HGU sponsored an episode of Genetics Unzipped - the Genetics Society's podcast series: The eyes have it: From genetics to gene therapy

In surveys people consistently rank vision as their most valued sense, but the reality is that many of us will have to face deteriorating eyesight thanks to genetic eye diseases. Around two million people are affected by visual loss as a result of genetic disorders. The idea of losing your sight is frightening so research into understanding the causes of genetic eye conditions and seeking treatments or cures is really important.

There are more than 350 inherited eye diseases and more than 500 genes that causing these conditions. MRC Human Genetics Unit (HGU) research into eye disease spans inherited conditions affecting the retina, the cornea and the whole eye. MRC HGU with support from the MRC has sponsored a Genetics Unzipped Podcast "The eyes have it: From genetics to gene therapy" out on Thursday, 2 July 2020.

This podcast episode reveals some of the innovative research currently taking place on genetic eye conditions. How are researchers, doctors and people living with genetic eye diseases working together? Find out about research into the genetic causes of some eye diseases through to urgently-needed treatments that could save or restore sight.

Chloe Stanton
A Research Fellow describes her research on the genetic causes of eye diseases that affect the eye's cornea or the retina.

Ken Reid
Now in his early 60's, describes gradually losing his sight as a teenager and being diagnosed with a degenerative eye condition Retinitis Pigmentosa at 26. Ken reveals how he has learned to cope with a series of 'new normals' and why he decided to support MRC HGU research by generously providing a skin biopsy.

Roly Megaw
Consultant Ophthalmologist and Clinical Researcher has both a clinical and research interest in genetic eye disease. Roly talks about his research that focuses on the inherited retinal dystrophy called Retinitis Pigmentosa.

Professor Robin Ali
Director of the Centre for Cell and Gene Therapy, King's College London outlines his research on developing gene and cell therapy for the treatment of retinal disorders and the gene therapy trial on Retinitis Pigmentosa and looks into the future.

Mary Derrick
Partnership Communications Manager, Medical Research Council said "Engaging meaningfully with people living with genetic eye conditions ensures that MRC-funded research better reflects their needs and aspirations, with the goal of increasing the beneficial impacts on their lives".
Year(s) Of Engagement Activity 2021
URL https://geneticsunzipped.com/blog/2020/6/29/s314-the-eyes-have-it-from-genetics-to-gene-therapy
 
Description Hosting 3 UoE Mastercard Scholarships students in clinic - Summer research project 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact 27 August & 2 Sept 2021, 10am - 3pm: Dr Olga Oikonomidou, CRUK EC, hosting UoE Mastercard Scholarships students in clinic

The University of Edinburgh Mastercard Scholarships students summer research project: Best UK practice re mental health support of breast cancer patients to share with a cancer clinic in Nigeria. The Scholars Program at the University of Edinburgh provides postgraduate scholarships to students from Africa with great academic and leadership potential but few educational opportunities. Students joined Dr Olga Oikonomidou, CRUK Edinburgh Centre, in her WGH clinic on 2 occasions to get some experience on dealing with breast cancer patients, listening to their concerns etc. and engaging with Cancer Nurse Specialists (CNSs).
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/student-funding/mastercard-foundation
 
Description IGC Virtual Tour for EXPLORATHON - Scotland's EU Researchers Night programme of events 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Fri 24 Sept 2021, 4pm: EXPLORATHON (EU Researchers Night)

Explorathon is a Scotland-wide festival that celebrates the research happening in our universities through a lively programme of free public events. Funded by the European Commission, the festival is part of 'European Researchers' Night', In 2020, we created a Virtual Tour of our Institute and shared this via festivals such as EXPLORATHON, which had an online programme again in 2021.
Year(s) Of Engagement Activity 2021
URL https://www.explorathon.co.uk/activities/institution-of-genetics-and-cancer-igc/
 
Description IGC Virtual Visit for Doors Open Day 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 25 & 26 September 2021: Doors Open Day - Edinburgh with the Cockburn Association

The DOD 2020 IGC Virtual Visit webpage was updated:
17 videos, grouped around 5 key themes:
Virtual tours of our research support facilities
Why we use animal models in our research and how we're addressing ethical challenges
How our institute is helping to tackle COVID-19 - through CovidLife, CoronaGenes &TestEd research projects
Taking on the challenge of Cracking Cancer
Deciphering Genetic Disorders
Year(s) Of Engagement Activity 2021
URL https://www.cockburnassociation.org.uk/dod/institute-of-genetics-cancer/
 
Description IGC Virtual Visit for the Edinburgh Science Festival 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Sat 26 June - Sun 11 July 2021: Edinburgh Science Festival (Moved from normal dates of Easter school holidays due to the Pademic)

When visiting the Western General Hospital, the group of 3 building opposite Fettes College are part of the University of Edinburgh. The central glass-fronted building is the MRC Institute of Genetics and Cancer (previously known as the IGMM). This striking building was completed in 2016 and this research institute is a partnership between 3 centres - the MRC Human Genetics Unit (HGU), The CRUK Edinburgh Centre (CRUK EC) and the Centre for Genomic & Molecular Medicine (CGEM). Each research centre has its own unique history, but the powerful synergy emerging from their common research strengths led to the formation of the IGMM in 2009. The story of biomedical research stretches back to the post-war period and works towards delivering better understanding of genetic diseases, including cancers, with quicker diagnosis, improved and tailored treatments - ensuring better health outcomes. We will take you behind the scenes and show off some of our cool tools. We'll reveal some of our research in action - how we're helping to tackle COVID-19, cancer and rare diseases and how we're addressing ethical challenges, such as the use of animals in research. We'll show that science is for everyone as our researchers describe their work and what motivated them to become researchers.
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/c/institute-genetics-cancer-virtual-visit
 
Description MSc SciComm & PE Students wrote a blog post about their placement working on Science Insights 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Thursday 9 December 2021: UoE MSc SciComm & PE Students - Alex and Joe wrote a blog post about their placement with CRM - IRR working on Science Insights

University of Edinburgh MSc Science Communication & Public Engagement students - Alex and Joe wrote a blog post about their placement with CRM - IRR working on Science Insights, our CMVM week-long work experience programme for S5 pupils
Year(s) Of Engagement Activity 2021
URL https://blogs.ed.ac.uk/regeneration-repair/working-with-science-insights
 
Description Ovarian Cancer Awareness Month - CRUK Edinburgh Centre Twitter Campaign 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact March: Ovarian Cancer Awareness Month - CRUK Edinburgh Centre Twitter Campaign

Featuring
Professor Charlie Gourley
Professor C Simon Herrington
Dr Ailith Ewing

Twitter Followers: 1,604
Year(s) Of Engagement Activity 2021
 
Description Paget's Awareness day event 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Tues 11 January 2022, 5-6pm: Paget's Awareness day event

A series of videos presented a global perspective on Paget's disease:
Q&A AUDIENCE: 11 joined the virtual Q and A from across the K & US, Canada, Belgium
& AUDIENCE for Prof Stuart Ralston's video interview of Recardo Patrick
Paget's Association using paid social media advertising with an external provider until the 25 Jan, as well as Youtube/website 
Details and YouTube links (views up to 15.02.22)
1. Prof Stuart Ralston - Short video used for early advertising (94 views to date - 22 YouTube, 72 Facebook) -
https://youtu.be/dLBZgbwJjLU
2. Prof Stuart Ralston - Introduction to Paget's Day and the videos - (385 views to date - 257 YouTube, 128 Facebook)
https://youtu.be/8m_NK5X0wKA
Year(s) Of Engagement Activity 2022
URL https://paget.org.uk/global-perspective-pagets
 
Description Prof Liz Patton, MRC HGU, delivered the 3rd Annual Barry Paw lecture, Harvard Medical School, USA 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Thurs 6 Jan 2022, 4-6pm ET: Prof Liz Patton delivered the 3rd Annual Barry Paw lecture
Children's Hospital Boston, Harvard Medical School, USA

Cellular genomics in discovering new cell populations in melanocyte development and melanoma"
Boston Children's Hospital Stem Cell Programme, Harvard Medical School
Liz's research, like Barry Paw's pioneering blood cell research, is strengthened by the use of zebrafish as a model organism for human development and disease
Year(s) Of Engagement Activity 2022
 
Description Professor Sara Brown interview - The Times Future of Healthcare supplement 
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 Public/other audiences
Results and Impact December 2021: Professor Sara Brown's article

'What DNA screening could hold for the future of healthcare'
Consumer genetic tests reveal a range of health traits, from kidney disease to the potential for hair loss. But how reliable are the results?
"More than 10 million people have taken the 23andMe test alone. So should we all be taking a DNA test? And if the results are so profound, why doesn't the NHS offer such services?"The bottom line is I haven't done it myself," says Sara Brown, a professor at the University of Edinburgh specialising in the genetic causes of disease. "That should tell you something about how highly I value it. We're all keen to have the equivalent of a crystal ball. So I can totally understand why people want to do it. But would I ever recommend it to a patient? I wouldn't." Brown explains that genetics is almost always too complex to be reduced to a set of results delivered via an app. "The uncertainties make it really difficult to recommend for a specific question." For example, look at the likelihood of contracting a disease: "If you have an 80% risk, you've got a 20% likelihood you won't get it. How then do you use that information in your everyday life?" Factor in lifestyle, environment, and umpteen other genetic variables, and the gap between genes and real-world outcomes become perilously uncertain. "Very, very few diseases are a single gene," she warns. "The vast, vast majority of human diseases are related to multiple genetic effects interacting with each other and also interacting with multiple environmental factors." "I have used research data from 23andMe," says Brown. "They share collected genetic testing with researchers and I've benefited from this." Brown says the company's numbers "blew out of the water the numbers from other sources. Genetics is about numbers, it's about probabilities. We need bigger and bigger numbers. And that's what we get through resources such as 23andMe."
Year(s) Of Engagement Activity 2021
URL https://www.raconteur.net/healthcare/dna-screening-future-healthcare/
 
Description Research Update for 'Coats plus' international families group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Tuesday 14 December 2021, 7-8pm: Research Update for 'Coats plus' international families group

Professor Yanick Crow, MRC HGU, presented a research update session on Coats plus syndrome is an inherited condition characterised by an eye disorder called Coats disease, plus abnormalities of the brain, bones, gastrointestinal system, and other parts of the body. Coats disease affects the retina at the back of the eye that detects light and colour. Coats plus syndrome is caused by mutations in the CTC1 gene, the STN1 gene or the POT1 gene.
The brain abnormalities of Coats plus are very similar to those of LCC, (Labrune syndrome)
AUDIENCE: 8 families - all from the USA
Year(s) Of Engagement Activity 2021
 
Description Retina UK Webinar with Dr Roly Megaw, MRC HGU 
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 23 Sept 2021, 7-8pm: Retina UK Webinar - Dr Roly Megaw

Dr Roly Megaw is a Clinical Lecturer and Honorary Consultant Ophthalmologist at University of Edinburgh and NHS Lothian.  He combines his clinical job of running the Inherited Retinal Dystrophy Clinic in Lothian with his lab research, which aims to understand the causes of sight loss in Retinitis pigmentosa. He regularly provides research updates to the Retina UK community.
Year(s) Of Engagement Activity 2021
URL https://retinauk.org.uk/research-news/exciting-developments/
 
Description Royal Statistical Society event 
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 18 March 2021, 18.00-19.15: Royal Statistical Society event

Event Coordinator: Dr Ailith Ewing, Chancellor's Fellow, MRC HGU & Edinburgh Local Group Secretary of RSS

Presenters
Dr Shona Kerr, Project Manager of the QTL in Health and Disease group, MRC HGU
Professor Jim Wilson, Professor of Human Genetics, MRC HGU & Usher Institute
Dr Riccardo Marioni, Chancellor's Fellow, CGEM
Year(s) Of Engagement Activity 2021
URL https://rss.org.uk/training-events/events/events-2021/local-groups/rss-edinburgh-local-group-the-pow...
 
Description STEM Ambassador Talk to Higher Biology pupils at Williamwood HS 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact 21 June 2021, 2-3pm: Dr Cath Heath virtual talk on COVID-19 testing, Williamwood HS

Dr Catherine Heath, MRC HGU - an IGC STEM Ambassadors, gave an online talk on COVID-19 testing talk to 20 Higher Biology pupils at Williamwood HS, Gloasgow
Year(s) Of Engagement Activity 2021
 
Description STV Interview with Prof Charlie Gourley, CRUK Edinburgh Centre, IGC 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Sunday 10 October 2021 STV Interview with Prof Charlie Gourley 

STV Interview with Professor Charlie Gourley about gene testing for ovarian cancer. Professor Charlie Gourley is the Clinical Director of the CRUK Edinburgh Centre & Director of the Nicola Murray Centre for Ovarian Cancer Research, University of Edinburgh.

STV News at Six continues to be the best watched news programme in Scotland, regularly achieving ratings of more than 500K
Year(s) Of Engagement Activity 2021
 
Description SWAN UK Virtual Information Event on Genetic Services in Scotland 
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 21 April 2021: 10am - 2.30pm, Prof David Fitzpatrick presented on Genetic Services in Scotland at the SWAN UK Virtual Information Event

SWAN UK Virtual Information Event on Genetic Services in Scotland with the Genetic Alliance UK. providing support for peopile living with Genetic Conditions and their carers

1.30-2.30pm, Country-specific breakout sessions

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. An alliance of over 200 patient organisations that hosts Rare Disease UK, the national campaign for people with rare diseases and all who support them. SWAN UK (syndromes without a name), the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK

Audience: One parent attended from 11 families that had registered
Year(s) Of Engagement Activity 2021
URL https://www.undiagnosed.org.uk/events/swan-uk-virtual-information-event/
 
Description Sci-Art Project 'Evolving Ourselves with Unnatural Selection' shortlisted for the European Commission initiative S+T+ARTS - Innovation at the nexus of Science, Technology, and the ARTS. 
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 Dec 2021 - Jan 2022

The Sci-Art Project 'Evolving Ourselves with Unnatural Selection' was shortlisted for the European Commission initiative S+T+ARTS - Innovation at the nexus of Science, Technology, and the ARTS. They presented to the jury in Italy in January 2022.
Year(s) Of Engagement Activity 2021
URL https://starts.eu/
 
Description SciArt Workshop - part of the Evolving Ourselves with Unnatural Selection SciArt project 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Fri 25 June 2021, 4-5pm: Sci-Art Project: ECA, IGMM & St Andrews: Evolving Ourselves with Unnatural Selection

This is a collaborative project between artists, researchers & patient voices exploring and presenting ethical implications of gene editing through a digital multi-arts approach began in April 2019. It secured funding from Creative Scotland - The National Lottery Open Fund: Sustaining Creative Development 2020-21 £49,950. The project aims to foster an open dialogue between artists, researchers and patient voices that seeks to navigate the ethical, empirical and creative challenges around gene editing. The project looks at bringing together research, data science, visual arts, sound and language into an experimental toolkit and set of frameworks that presents the project findings via an online digital platform using machine learning and a variety of cutting edge digital arts tools to enable the public to engage with playful online interactive interventions. PROJECT PARTNERS: Edinburgh College of Art Artists: Linda O Keeffe, Tony Doyle, Ashley James Brown; Researchers from IGC & St Andrews University (Prof Malcolm White), Genetic Alliance and Race on the Agenda (ROTA). The project will serve as a springboard for future creative arts investigations into how the arts and cultural collectivity can help share some of the world's most complex scientific problems.

Genetic Researcher Focus Group session 2
Professor Ian Jackson, Head of Disease Mechanisms, MRC HGU
Dr Faith Davies, Research Fellow, Cathy Abbott RG, CGEM
Yutting Lu, PhD Student, Liz Patton RG, MRC Human Genetics Unit
Sophie Nakford, PhD student - EdMed- MGPHS, Pleasie Mill RG
Dee Davison, IGC Public Engagement Manager
Nick Meade, Joint Interim Chief Executive / Director of Policy, Genetic Alliance
Year(s) Of Engagement Activity 2021
URL https://evolvingourselves.non-random.co.uk
 
Description SciArt project online event - SurveyWorld: Evolving Ourselves with Unnatural Selection, part of EXPLORATHON (EU Researchers Night) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Fri 24 Sept 2021, 4pm
SurveyWorld: Evolving Ourselves with Unnatural Selection 
How do you feel about emerging technologies in biological sciences like gene editing? 

This online event was created to contribute to research for a project run by the "Non-Random Collective" funded by Creative Scotland, working alongside researchers from the Institute of Genetics and Cancer (IGC) at the University of Edinburgh, and the Biomedical Sciences Research Complex at St Andrews University, Genetic Alliance and Race on the Agenda (ROTA). The project explores the ethical implications of emerging technologies in the biological sciences, in particular the field of gene editing technology.
The event was presented by Dr Linda O'Keeffe  - Head of the School of Fine Art, Edinburgh College of Art Edinburgh University and Malcom White,  Professor at School of Biology at St Andrews. The researchers will talk about their work and facilitate a discussion which will contribute to the overall findings of the project. Attendees will be invited to contribute their views and observe and participate in - "SurveyWorld" - the project's online research environment.
The purpose of this Sci-Art R&D project is to make tangible with visible/audible outputs, the ethical implications of emerging technologies in the biological sciences, in particular the field of CRISPR gene editing technology. We will explore and present some of the ethics and future implications of gene editing through a digital multi-arts approach.
Participants experienced this project's interactive online audio-visual space.  This game space world presented fictional scenarios based on real world issues.  Participants needed to make considered decisions that that could fundamentally alter the genome of many species and may affect current and future ecosystems.  
By engaging with this game space, participants contributed to the development of this project, helping to facilitate the next stages in reflecting on how humanity might move forward using powerful new tools in an ever changing world

Online Audience: 17
Year(s) Of Engagement Activity 2021
URL https://www.explorathon.co.uk/events-programme/surveyworld-evolving-ourselves-with-unnatural-selecti...
 
Description Science Insights - a week-long work experience online programme for 40 S5 secondary school pupils 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Mon 26 - Fri 30 July 2021

Science Insights is a week-long summer work experience programme, initiated by IGMM in 2014 that has expanded across the College of Medicine and Veterinary Medicine. It was created in response to demand from teachers and pupils for S5 work experience opportunities within our labs and we have proactively forged and valued partnerships with Widening Participation; the Inclusion Matters Project and Moray House, (all at the University of Edinburgh); Scottish Secondary Biology Teacher Networks & Education Scotland, and with the Concordat on Openness in Animal Research and Technician Commitment team, all in order to make our programme as inclusive and equitable as possible and to be open and transparent in showcasing our research.

Science Insights is designed to give 16 year old school pupils a real insight into the work and life of research scientists across different areas of biological, biomedical and animal sciences. Science Insights is for S5 pupils who attend school in Scotland and are interested in studying biological, biomedical or animal sciences at university.

The non-residential, week-long programme takes place in late July. It includes presentations and discussions on a range of topics, such as:
Ethics in research; The use of animals in research; Science is for everyone - Equality, Diversity & Inclusivity in research and Careers path options
Skills session on applying to university. The core of the on campus version of the programme is laboratory research taster sessions and tours of specialist research facilities. In the online version of the programmer, pupils meet researchers at numerous "Meet the Scientist" sessions.

Science Insights engages S5 pupils from all over Scotland and is supported by Scottish Science teachers and CMVM Researchers and Technicians, who recognise it to be a high quality work experience programme. Large numbers of researchers, technicians and students volunteer to help deliver this programme, with over 150 involved in the on-campus programme. The number of pupils participating increased from 16 to 40 per year and the catchment area expanded. In response to the Pandemic, a new online programme was developed and was delivered successfully in 2020 and 2021, increasing the capacity to 60 pupils and attracting pupils from across Scotland, generating positive feedback.

Science Insights also provides our research scientists and technicians with a well-supported opportunity to engage with school pupils and develop their own engagement - science communication skills while they provide insights into studying science; working in research within wider societal context and career path options.

The university's Widening Participation team works closely with the Science Insights team to ensure that pupils from a range of different backgrounds take part. We know that Science Insights is impactful and inspires many S5 pupils to go onto university, with a proportion being first generation undergraduate students. Given that this programme has diverse positive outcomes, we are keen to expand the capacity AND to deliver both programme options in the future, with an on-campus programme for pupils within the local catchment area and an online programme for pupils from across Scotland, in order to ensure equity of access to work experience and enable more young people to experience Science Insights.
Year(s) Of Engagement Activity 2018,2019,2020,2021,2022
URL https://www.ed.ac.uk/medicine-vet-medicine/engage-with-us/science-insights
 
Description Shining a Light on Genetic Diagnosis 
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 Mon 28 February 2022, 6-7.30pm: Shining A Light on Genetic Disorder Diagnosis for Rare Disease Day

Shining a Light on this vital area of research, Professor David FitzPatrick outlined the work of the Genomic Data Analysis Centre (GDAC) at the MRC Human Genetics Unit. Dr Alison Meynert explained how whole exome-trio analysis reveal rare variants. Dr Morad Ansari and Dr Louise Thompson described the work of the NHS SE Scotland Regional Genetics rare disease diagnostic service. Natalie Frankish of the Genetic Alliance shared their new recomendations for diagnosis and patient and family perspectives. The discussion explored the challenges of diagnosing rare genetic conditions and explore the latest developments from behind-the-scenes as the diagnostic process improves.

Programme
18:00-18.05: Introduction - Why can rare genetic conditions be so hard to diagnose? Prof Wendy Bickmore, Director, MRC Human Genetics Unit
18:05-18.20: The clinical approach to diagnosing rare disease in children: Prof David FitzPatrick, Clinical Research Programme Leader, MRC HGU & NHS Consultant in Paediatric Genetics
18:20-18:30: How whole exome-trio analysis reveals rare variants: Dr Alison Meynert, Bioinformatics Analysis Core Manager, Institute of Genetics and Cancer
18:30-18:40: NHS Diagnostic testing for severe developmental disorders in Scotland: Dr Morad Ansari & Dr Louise Thompson, Clinical Scientist, South East Scotland Genetic Service
18:40-18:50: Personal perspective from patient representative TBC
18:50-19:00: Genetic Alliance new report - what defines a Good Diagnosis: Natalie Frankish, Policy and Engagement Manager for Scotland, Genetic Alliance
19:00-19:30: Q&A
Year(s) Of Engagement Activity 2022
URL https://www.ed.ac.uk/institute-genetics-cancer/news-and-events/events/latest-events/shining-a-light-...
 
Description Shining a Light on Genetic Eye Conditions 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact 15 June 2021, 6-8pm: Shining a Light on Genetic Eye Disease
Online Audience: 114

People living with genetic disorders and their families are at the heart of research at the Institute of Genetics and Cancer. This online event was compered by Glaswegian comedian Jamie MacDonald, whose routine involves his experience living with retinitis pigmentosa (RP) - a degenerative eye condition caused by a mutation in over 100 potential genes. Staff from Retina UK presented their report "Unlock Genetics from Retina UK: a new resource for families affected by inherited sight loss". A person l;iving with RP shared his insights on this genetic eye condition. Researchers from the MRC HGU presented on RP, Aniridia, keratoconus, brittle cornea syndrome and retinal degeneration, as well as the use of computational modelling of protein structures to understand the molecular mechanisms underlying mutations that cause eye disease. This event engaged with people living with genetic eye conditions, the Retina UK team, clinical geneticists and ophthalmic clinicians
Year(s) Of Engagement Activity 2021
URL https://www.bionews.org.uk/page_156955
 
Description Shining a Light on Osteogenesis imperfecta 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact 8 June 2021, 5-6pm: Shining a Light on Osteogenesis imperfecta (Brittle Bone Disease)
Online Audience: 40

People living with genetic disorders and their families are at the heart of our Institute's research and we created our programme of Shining a Light events to celebrate the power of partnerships. When we collaborate with people living with genetic conditions and our NHS colleagues, our research has the greatest impact. At our Shining a Light events, researchers and people living with genetic conditions co-present, providing illuminating insights.
This event showcased the clinical trial work undertaken within CGEM by Professor Stuart Ralston and the TOPaZ Clinical Trial which is investigating whether a two-year spell of treatment with two drugs, teriparatide (TPTD) & zoledronic acid (ZA),reduces the risk of broken bones in people with Osteogenesis Imperfecta OIU - also known as brittle bone disease.

Mandy Grant shared her own experience of living with OI and how OI has affected her wider family, in the hope of helping others, with Dee Davison, IGC Public Engagement Manager. Representatives of 2 charities that provide vital assistance to people living with OI also presented. Patricia Osborne, CEO described how Brittle Bone UK provides invaluable support to those affected and their families, while Ingunn Westerheim, the President of OIFE outlined the mission of Osteogenesis Imperfecta Federation Europe - to connect and empower organisations, professionals and individuals to improve the lives of people living with this rare condition.
Year(s) Of Engagement Activity 2021
 
Description Shining a Light on XLH - a rare bone disease (Rare Disease Day) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact 2 March 2021, 4.30-5.30pm: IGMM Shining a Light on XLH - a rare bone disease (Rare Disease Day)

Online Audience: 66

Professor Stuart Ralston provided an overview of XLH and the current research. His patient Ryan described his own experiences of living with XLH and participating in Stuart's XLH Burosumab Clinical Trial. Audience: 66 in the audience, including some of Stuart's XLH / ADHR patients & 15 people via the XLH UK support group, Nurses from Stuart's Clinical Trial & 4 senior staff from Kyowa Kirin International (XLH clinical trial) 

"Ryan's story is remarkable. He & his family have shown wonderful positivity & impressive resilience. Ryan's life has been transformed by the Clinical Trial - he is now pain free & can live a normal life."
"What a really engaged audience of 66, with a lot of sensible & important questions posed by people living with such a rare bone condition"
"Ryan was the golden thread that ran through the whole session. It was wonderful to see a patient responding so well to a Clinical Trial"
Year(s) Of Engagement Activity 2021
 
Description Shining a light on brain cancer for world cancer day zoom event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Thurs 3 February 2022, 6-7.30pm: Shining a Light on Brain Cancer For World Cancer Day

Dr Cath Adam, Dr Adam Byron and Dr Michael Poon shared their insights into how research is paving the way towards more effective treatments for people living with brain cancer. The event was held via zoom and reached a wide audience.
Programme
18:00-18.10: Introduction - Why are brain tumours so hard to treat? Dr Paul Brennan, Senior Clinical Lecturer and Honorary Consultant Neurosurgeon at the CRUK Edinburgh Centre, IGC, University of Edinburgh & NHS Lothian.
18:10-18:30: Personal perspective from patient representative, Heather Duff
18:30-18:40: Drug Discovery Research update: Dr Cath Adam, Research Fellow, Prof Asier Unciti-Broceta's research group, CRUK Edinburgh Centre, IGC
18:40-18:50: The role of discovery research in  expanding our understanding of cancer: Dr Adam Byron, CRUK Edinburgh Centre, IGC
18:50-19:00: Improving brain cancer treatments and survival rates: Dr Michael Poon, CRUK Clinical PhD Fellow, Brain Tumour Centre of Excellence, CRUK Edinburgh Centre, IGC
Year(s) Of Engagement Activity 2022
 
Description Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live session for secondary school pupils 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact 5 October 2021, 9.40am: Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live sessions for secondary school pupils

Connor Warnock, Design, Publication and Digital Media Assistant, Institute of Genetics and Cancer

The sessions bring people from across a range of different sectors into the classroom (virtually) to give young people a real insight into their world of work.
During a 40-minute facilitated session, the researcher talks about their workplace, their role, and their education and career pathway.
Pupils ask questions at the end of the session, hosted on MS Teams Live
ONLINE AUDIENCE:
Schools that attended - Lesmahagow High School and Craigmount High School
Pupil numbers: 50
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=E-dH_SlmMdM&t=7s
 
Description Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live session for secondary school pupils 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact 4 November 2021, 9.40am: Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live sessions for secondary school pupils

Dr Catherine Adam, Postdoctoral Research Fellow, Innovative Therapeutics Lab, CRUK Edinburgh Centre

The sessions bring people from across a range of different sectors into the classroom (virtually) to give young people a real insight into their world of work. During a 40-minute facilitated session, the researcher talks about their workplace, their role, and their education and career pathway.
Pupils ask questions at the end of the session, hosted on MS Teams Live
ONLINE AUDIENCE:
Schools x 5: Glasgow Gaelic School, Knox Academy, Lesmahagow High School, Lomond School and Leith Academy
Pupil Numbers: 77
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=PbodgZ0ogCM
 
Description Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live sessions for secondary school pupils No 3 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Schools
Results and Impact 9 November 2021, 9.40am: Skills Development Scotland's My World of Work (MyWoW) Live team Meet the Expert Live sessions for secondary school pupils

Tammy Piper, Tissue Bank Manager, The Biomarkers & Companion Diagnostic Group, CRUK Edinburgh Centre

The sessions bring people from across a range of different sectors into the classroom (virtually) to give young people a real insight into their world of work.
During a 40-minute facilitated session, the researcher talks about their workplace, their role, and their education and career pathway.
Pupils ask questions at the end of the session, hosted on MS Teams Live
ONLINE AUDIENCE:
Schools x 7: Lesmahagow High School, Ross High School, Moffat Academy, Cathkin High School, James Gillespie's High School, Liberton High School and Leith Academy
Pupil Number: 331
Year(s) Of Engagement Activity 2021
URL https://www.youtube.com/watch?v=FZ2-Swp5qOw
 
Description Social Media campaign on IBD 
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 15 May - 13 June 2021: Prof Charlie Lees, CGEM posted an atomic essay & video on Twitter every day for 30 days, creating a gallery

Essays & videos posted daily on IBD by Prof Charlie Lees, CGEM, IGC

Exploring IBD
unanswered questions 
unmet need 
improving outcomes 
environment, diet, the microbiome & genetics 
digital health 
Resilience

ONLINE AUDIENCE: 8252
Year(s) Of Engagement Activity 2021
URL https://charlielees.substack.com/?utm_medium=web&utm_campaign=pss
 
Description Tammy Piper, CRUK Edinburgh Centre, interviewed for University of Edinburgh podcast 'Sharing Things' 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Undergraduate students
Results and Impact 21 October 2021: Tammy Piper interviewed for UoE podcast 'Sharing Things'

Tammy Piper, Tissue Bank Manager, The Biomarkers & Companion Diagnostic Group, CRUK Edinburgh Centre

Recording Date: 18 August
Broadcast date: Thurs 21 October

Interviewed with Dr George McGavin, Entomologist, TV presenter and melanoma patient
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/alumni/services/sharing-things-podcast
 
Description TheGeneticsPodcast on Decode ME 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact 10 November 2021: TheGeneticsPodcast on Decode ME

Patrick Short spoke to Sonya Chowdhury, Chris Ponting & Andy Devereux-Cooke from the DecodeME Study, the world's largest genetic myalgic encephalomyelitis and chronic fatigue syndrome study
Year(s) Of Engagement Activity 2021
URL https://podcasts.apple.com/us/podcast/ep72-the-decodeme-team-on-the-challenges-facing/id1462418412?i...
 
Description Three Minute Thesis Winner: 'Building Bridges for Glioblastoma Research' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact 24 June 2021, 2pm: Michael Poon won the UoE Final of 3MT- Three Minute Thesis

Michael Poon won the University of Edinburgh Heat of Three Minute Thesis Winner with his talk 'Building Bridges for Glioblastoma Research'

Michael Poon, a neurosurgical trainee undertaking a ECAT-linked CRUK-funded Clinical PhD Fellowship in our Cancer Centre and the Brain Tumour Centre of Excellence researching glioblastoma brain tumours, competed and won the UoE Final of 3MT with his presentation 'Building Bridges for Glioblastoma Research'
Year(s) Of Engagement Activity 2021
URL https://www.ed.ac.uk/institute-academic-development/postgraduate/doctoral/3mt/2021-3mt-finalists-vid...
 
Description Virtual Tour with AMMF - the Cholangiocarcinoma charity 
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 Weds 9 Feb, 2.30-3.30pm 2022: #WhyLabResearchMatters Virtual Lab Tour event with CRM & AMMF - the Cholangiocarcinoma charity

An innovative PPI event, prior to World Cholangiocarcinoma Day on Saturday, 12 Feb, part of Cholangiocarcinoma Awareness Month.
The MRC HGU collaborated with the Centre for Regenerative Medicine (CRM) to provide a Virtual Lab Tour for AMMF - the Cholangiocarcinoma charity, who fund some of Luke Boulter's group's research. Using the CRM Virtual Tour, we were able to show what a research centre is like, including the specialist research facilities, and shared videos of Luke, Rachel, Anabel and Mollie describing their research on bile duct cancer.
For people living with Cholangiocarcinoma, this provided real insights into how the fundraising undertaken by AMMF supports vital research in Luke's group. It was an inspiring event that triggered lots of excellent and challenging questions from the audience.
Year(s) Of Engagement Activity 2022
 
Description Westminster Parliament POST 
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 Thursday 2 December 2021: Westminster Parliament POST

POST (Parliamentary Office of Science and Technology) iwrote a POSTnote (research briefing) on age assessment of children in immigration policy. Draft legislation in the Nationality and Borders Bill sets out the possibility for the future use of molecular analytical tests that could be used to determine an individual's age. The Government has specified that such tests could include: "the analysis of saliva, cell or other samples taken from a person (including the analysis of DNA in the samples)."
POST sought experts with a background in molecular and genetic research to help with:
understanding the scientific credibility of the Government's proposals, and
finding and interpreting the relevant scientific literature
Nick Gilbert, TestEd & Riccardo Marioni: "We are probably quite well placed to comment on the science behind this in terms of DNA methylation."

RIccardo Marioni commenting on the science behind this in terms of DNA methylation - still the most accurate way to predict chronological age from a blood or saliva sample. 

RIccardo Marioni reviewed a 4 page summary document, with a specific focus on appraising the potential of DNA methylation for age prediction
Year(s) Of Engagement Activity 2021
 
Description Why Me? Searching for genetic susceptibility to chronic fatigue syndrome and pain 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact 17 June 2021: IGC sponsored an episode of Genetics Unzipped - the Genetics Society's podcast series: Why Me? Searching for genetic susceptibility to chronic fatigue syndrome and pain

This podcast episode, supported by the Institute of Genetics and Cancer at the University of Edinburgh, reveals how researchers are using genetics to understand more about what's going on in long-term debilitating conditions including ME/CFS and chronic pain, working hand in hand with patients to help to figure out who might be at risk and pointing towards new ideas for treatment. The major new research study called DecodeME, will search for genetic variations that may explain why some people are more likely to develop ME/CFS than others. One of the most important parts of the DecodeME study is that people living with ME/CFS are involved in every aspect of it, and Andy Devereux-Cooke who has ME, is playing a leading role in the study management team. Another life-limiting health issue - chronic pain was discussed with Professor Blair Smith is a consultant in pain medicine at Ninewells Hospital in Dundee, and is one of the clinical researchers working on Generation Scotland - a large research study looking at the health, wellbeing and genetics of more than 24,000 people living in Scotland, from around 7,000 families, hosted by the MRC HGU. Professor Caroline Hayward and her team at the MRC Human Genetics Unit, within the Institute of Genetics and Cancer, have been working together with clinical colleagues like Blair Smith, scanning through the DNA from thousands of people in the Generation Scotland study and other cohorts in search of genetic variations that might be contributing to chronic pain.

Regular listenership: 5,000-8,000 worldwide
Weekly hits on the RSS feed: 15,000
This episode had 400 plays on Spotify
Website: 2,600 visits to the main page for this episode
Year(s) Of Engagement Activity 2021
URL https://geneticsunzipped.com/blog/2021/6/17/s412-why-me-searching-for-genetic-susceptibility-to-chro...
 
Description Winner of SULSA ECR prize - Dr Didier Devaurs 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Thurs 24 February

The SULSA award for outstanding early career scientists whose work shows excellent potential to make an impact in the field of life sciences

This prize includes a fully-funded tour of 3 Scottish Universities where the awardee will deliver a seminar and £2,000 of flexible funding to be used at their discretion"

"One of the key things that made the jury choose me is how accessible my presentation was to a broad audience. Without your help, I would have not been able to reach that level." Didier Devaurs
Year(s) Of Engagement Activity 2022
URL https://sulsa.ac.uk/ecr-prize/