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. 

Are you a researcher looking for data scientist support?

Researchers across the University benefit from our JGI Seedcorn Funding. Funding is great when you have someone to do the work – but what if you don’t have the right data science expertise in house? For that, this summer we are trialling a new JGI Data Scientist Support service. This provides an alternative support mechanism for researchers who need expertise and time, but not funding. 

The Jean Golding Institute’s team of data scientists and research software engineers are here to support researchers across the University of Bristol fostering a collaborative research environment spanning multiple disciplines. Over the past seven years, our team has expanded thanks to various funding sources, reflecting the increasing importance of data science support in facilitating research outcomes and impact. 

Get in touch with our team to find out how they can help you with: 

  • Data analysis – recommendations or support with tools and methods for statistics, modelling, machine learning, natural language processing, computer vision, geospatial datasets and reproducible data analysis. 
  • Software development – technical support, coding (for example: Python, R, MATLAB, SQL, bash scripts), code review and best practices. 
  • Data communication – data visualisation, dashboards and websites. 
  • Research planning – experimental design, data management plans, data governance, data hazards and ethics. 

Our aim is to support researchers and groups that may not have in-house expertise but have project ideas that can be developed into applications for funding. We’re seeking projects that can take place over the summer until early autumn (July – October 2024). 

How to apply 

Please complete an online expression of interest form  

Deadline: 15 July 2024 

Selection process 

The JGI team will get back to you within one week, to discuss your request.  

If demand exceeds our current resource levels, we’ll meet with applicants to help prioritise projects. As with seedcorn funding, priority will go to applications that match JGI strategic goals and have clear pathways to benefit, such as an identified funding call or impact case. 

Examples of data science projects 

  • Social mobility analysis project – using local and national level data to investigate how different people in Bristol and other UK cities feel about life in their local environment. The JGI data scientist worked as part of a multidisciplinary team including University of Bristol researchers and external stakeholders, for around 2 days per week for 3 months. They analysed survey and geospatial data using Python, presented findings to the group. The output of the project was a grant application in which a data scientist was costed longer-term. 
  • Antimicrobial resistance project – examining patterns in observed levels of antimicrobial resistance during the COVID pandemic. The JGI data scientist worked with a University of Bristol researcher and collaborated with a public sector stakeholder, for around 4 days per week for 4 months. They performed statistical modelling using R, producing data visualisations of the trends found. The project has led to an Impact Acceleration Funding application to develop a tool used to support local health planning. 
  • Transport research-ready dataset grant – linking administrative datasets to support research into car and van use in the UK. The JGI data scientist developed data pipelines and provided methodological and data governance input into a successful ESRC funding application in a collaboration between researchers at the universities of Bristol and Leeds. The data scientist was a named researcher on the application and went on to perform data analysis as part of the project team.