IJPDS International Journal of Population Data Science

Researchers at the University of Bristol have received broad support for the creation of a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK. To find out if this would be practical and acceptable, the team consulted with a variety of stakeholders, including people with FASD, their families, healthcare workers, policymakers, and researchers through online workshops, video calls, and emails.

They expressed several potential benefits of having a National FASD Database:

• Increased Awareness and Understanding: A national database for FASD could help both the public and professionals learn more about FASD, leading to better support and awareness.
• Improved Diagnosis: With a lot of detailed clinical information in one place, doctors could diagnose FASD more accurately and efficiently.
• Enhanced Research and Collaboration: The database could support national and international research collaborations, advancing global understanding of FASD.
• Insight into Long-term Impacts: It could provide valuable insights into the long-term health, educational, social, and economic impacts on individuals with FASD. This could support interventions to improve outcomes among people living with FASD and lead to significant cost savings for society.

Stakeholders also raised concerns about privacy and data security. Ensuring the confidentiality and secure handling of personal data would, of course, be critical. They suggested a balance between relying on ‘what the numbers say’ in the database and using doctors' professional judgments to ensure the data supports rather than replaces the insights of healthcare professionals.

Current estimates suggest that 1.8 - 3.6% of children in the UK are affected by Fetal Alcohol Spectrum Disorder, a neurodevelopmental disorder is caused by alcohol exposure during pregnancy. The disorder can lead to lifelong challenges with cognitive and behavioural issues. It is one of the leading non-genetic causes of developmental disability worldwide. Despite this, knowledge around FASD is lacking.  Lead author Dr Sarah Harding confirmed that “A national database for FASD could improve our understanding of the disorder, which would in turn help create better policies and services to support prevention and improve the lives of people living with FASD.”

The study, published in the International Journal of Population Data Science (IJPDS), concludes that setting up a national linked database for FASD in the UK is both doable and supported by stakeholders. The potential benefits, such as greater awareness, improved diagnosis, and advances in research, underline the importance of doing so.

Moving forward, the focus will be on addressing privacy concerns and working collaboratively with a wide range of stakeholders to ensure the database meets the needs of the FASD community. Its purpose will be to significantly improve the support and understanding of FASD and to pave the way for better outcomes for those affected by FASD and their families.

 

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Dr Sarah Harding, PhD, Senior Research Associate, National Institute for Health and Care Research, NIHR ARC West, University of Bristol

Harding, S., Samways, B., Dillon, A., Butcher, S., Boyd, A., Mukherjee, R., Cook, P. and McQuire, C. (2024) “Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and professional involvement to determine acceptability and feasibility”, International Journal of Population Data Science, 9(1). doi: 10.23889/ijpds.v9i1.2381.