To time with Fetal Alcohol Spectrum Disorder Awaress Month (September 2024) a team of researchers at the University of Bristol have published a paper on 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.
Dr Cheryl McQuire, a co-author on the paper, is a Research Fellow in Public Health Evaluation at the University of Bristol’s Medical School, with a particular interest in FASD. She explains:
“There is consensus for urgent action on FASD prevention, diagnosis and support,” said Dr McQuire, “but there is also a recognition that there is little data and equally little research into FASD in the UK. My own work found that at least 6% of children in the Avon Longitudinal Study of Parents and Children (ALSPAC) have symptoms consistent with FASD*1, and the first active-case ascertainment study in the UK found the prevalence of FASD to be up to 3.6% in mainstream schools*2.”
A recent study by the research team showed that FASD remains significantly under-researched. Read: Trends in fetal alcohol spectrum disorder research: A bibliometric review of original articles published between 2000 and 2023
Data deficit
An early step in enabling and enhancing subsequent research would be the establishment of a national database, as Dr McQuire explained.
“This would be the first national database for FASD in the UK (Nat-FASD UK)”, she said. “It and the research it accompanies will reveal - for the first time - the far-reaching health, social care and societal impacts of FASD in the UK. It will be a national resource, an enabler for the expansion of FASD research, and it will serve as a catalyst for implementation of improved FASD prevention, diagnosis and support. Our work will therefore prove pivotal in informing policy and practice for FASD prevention, identification and support.”
The main project was funded by the Jean Golding Institute. Further funding by the Elizabeth Blackwell Institute was used to incorporate the views and recommendations of people with FASD and their carers, using online focus groups, which were designed and delivered in partnership with the National Organisation for FASD. For people living with FASD, the main anticipated benefit was increased understanding, awareness, and support for FASD. Lived experience stakeholders expressed an urgent need for more data and research and communicated that a national FASD database could play an important part in achieving this.
“During these projects we spoke with over 100 stakeholders including clinicians, data specialists, researchers, policy makers, charities, people living with FASD and their carers,” explained Dr McQuire. “We demonstrated strong support for a national FASD database but there was concern among stakeholders about privacy and data sharing, emphasising the need for robust data governance processes.”
Collaborations
Dr McQuire and her team are in the process of collaborating with representatives from FASD clinics and secure data experts to develop a ‘data pipeline’ model as the first steps in the establishment of the national database for FASD.
“We are working on securing follow-on funding, maintaining the strong, widespread, collaborations that we have developed and strengthened through these projects,” said Dr McQuire.
Data and evidence from this work was published as part of the Health Select Committee alcohol-harm prevention inquiry and featured in the ADR UK Conference 2023. The projects were selected for inclusion in the Office for National Statistics (ONS) Research Excellence Series 2024, including a dedicated webinar: ‘Showcasing methods for diverse stakeholder involvement in database design’, which will take place on Thursday 17 October 10:30 to 11:30am. Register for this free webinar. The work is due to be published imminently in the International Journal of Population Data Science.
Dr McQuire said “This work has been invaluable in paving the way for progress in FASD in the UK. We hope to finally address this crucial FASD ‘data gap’ that has been stalling progress in prevention, understanding and appropriate support for too long.”