Updates from a previous JGI Seed Corn funded project:  Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’

We are delighted to announce a few updates regarding one of our previous seed corn funded projects. In 2022-2023, the JGI funded Cheryl McQuire’s (Bristol Medical School) project on “Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’: ascertaining the feasibility of establishing the first UK National linked database for FASD”. This project allowed Cheryl’s team to explore the feasibility of establishing a National Linked Database for Fetal Alcohol Spectrum Disorder (FASD) as Landmark UK guidance has called for urgent action to increase identification, understanding, and support for those affected with this disorder.  

FASD is caused by prenatal alcohol exposure and is thought to be particularly common in the UK population. The aim of the seed corn project was to make the initial steps towards forming a UK National Database for FASD looking at feasibility, acceptability, key purposes and the data structure needed. Through questioning over 100 stakeholders including clinicians, data specialists, researchers, policy makers, charities, and people living with FASD, the project was able todemonstrate a strong support for a national FASD database but there was a common concern among stakeholders about privacy and data sharing. Full details of the project can be found on our previous blog post.  

Cheryl and their team also collaborated with the Elizabeth Blackwell Institute (EBI) on “Developing a National Database for Fetal Alcohol Spectrum Disorder (Nat-FASD UK): incorporating the views and recommendations of people with FASD and their carers.” Their findings from the projects funded by JGI and EBI were presented at ADR-UK conference 2023. The abstract for this work can be viewed here. In addition, a pre-print of their FASD National database workshop findings is now available here.  

Importantly, this work has been selected to feature in the Office for National Statistics (ONS) Research Excellence Series 2024. Cheryl will be delivering a webinar on “Showcasing methods for diverse stakeholder involvement in database design: establishing the feasibility and acceptability of a National Database for Fetal Alcohol Spectrum Disorder (FASD)” on Thursday 13 June 10:30 to 11:30 BST. The webinar will cover how the team developed a tailored, multi-method approach to public and professional involvement activities, leading to high levels of engagement. In addition, you will also hear what people living with FASD and health care, policy and data science professionals had to say about the feasibility and acceptability of a UK National Linked Database for FASD. There will be an opportunity to ask Cheryl any questions during the dedicated Q&A section. You can register a place on the webinar here.  

The work from both projects has been crucial in paving the way for progress in FASD research within the UK. It has also allowed us to get closer to addressing the FASD data gap that has been stalling the progress in prevention, understanding, and appropriate support for too long. Since both projects, Cheryl’s team has continued working on the FASD database and is currently pursuing funding options to establish a National database for FASD.  

The Jean Golding Institute offers seed corn projects every year to support and promote activities that will foster interdisciplinary research in the area of data science, based on the principle that a small financial investment will lead onto bigger things. We anticipate that our next seed corn funding call will be announced in the autumn of 2024.  Sign up to our mailing list to find out when the call goes live.