Zohur Miah, the NIHR NAFLD BioResource Programme Manager and Farfia Capper, the NIHR Clinical Research Facility (CRF) Clinical Deputy Manager, were interviewed by Dr. Peter Rookes and Mehmooda Qureshi on the Connecting Communities show on Unity FM last October. They were also joined by a patient volunteer who spoke about her experience with liver disease and explained her motivations for taking part in research.
Unity FM is the UK’s largest Muslim community radio station, who support independent and impartial journalism assisted by lively debate and interesting discussions on socio-political and religious issues. We'd like to thank Unity FM for the invitation to feature on their station.
If you are able to, please have a listen to the show via the media player below and we've also outlined some of the talking points in the article.
BioResource Centre - Birmingham
Our BioResource in Birmingham is one of 18 Centres across England. They recruit volunteers to several different programmes, including members of the public without a specific health condition. Patients with a rare disease such as Bardet Biedl Syndrome and Cystinosis, or common diseases such as Inflammatory Bowel Disease (IBD) and Immune Mediated Inflammatory Diseases (IMID) can also join the BioResource in Birmingham to support research. Finally, Birmingham is our lead hub for the Non-Alcoholic Fatty Liver Disease (NAFLD) BioResource, which is run in partnership with the Birmingham Biomedical Research Centre (BRC) and BioResource and BRC colleagues in Newcastle and Nottingham. Recruitment of patients into the NAFLD BioResource is made possible by clinical teams at NHS Trusts across the country, working with patients and their clinicians to consent volunteers to the BioResource.
What is NAFLD?
Non-Alcoholic Fatty Liver Disease (NAFLD) represents a spectrum of liver disease, ranging from simple steatosis (fatty liver) through to advanced cirrhosis (scarring of the liver tissue).
Supporting research into the causes of NAFLD will help us understand if there are any indicators or patterns that can be linked to severity of NAFLD or response to treatment. In the interview, Zohur explains that one of the common comorbidities of NAFLD are patients with obesity or Type II diabetes, both conditions that are very common in the local community in the West Midlands. The fact these comorbidities are only a predisposition and not a guarantee of developing NAFLD is why researchers are investigating whether there is a genetic explanation for the disease.
Birmingham excels in NAFLD research because the Centre for Rare Diseases at the local BRC recruits patients from all over the UK, thanks to the big renal facility at the Queen Elizabeth Hospital. Studies involving the BioResource are just some of a variety of trials coordinated by delivery teams at the CRF, managed by Farfia, something she discusses during the show. Whilst the pandemic impacted the number of new recruits to the NAFLD BioResource, Zohur and the rest of the NAFLD team pleased that new participant figures are moving rapidly towards a target of 7,500 from across the country and the spectrum of NAFLD conditions.
Patient testimonial
Mary, a NAFLD volunteer, was diagnosed with the condition four years ago, and joined the show to speak about her experience as a patient, including problems with her thyroid and polycystic ovaries, and why she became a BioResource volunteer. Mary wants people to be aware that blood tests can reveal underlying conditions that a person would not otherwise know about, stressing that it takes a minimal amount of effort to sign up and donate samples once or twice a year, all for the benefit of supporting the future generation by improving our knowledge of these conditions.
How does the BioResource support research?
Patients are recruited into the BioResource via their clinician, and a blood sample is taken. Health and lifestyle information is then collected via questionnaire and the volunteer consents for the BioResource to access their medical records when required. DNA is extracted from the blood samples, genetically analysed and then stored and banked. Scientists who wish to use the samples for research can submit an application to the BioResource, which gets reviewed by a scientific advisory committee. The committee consists of clinicians, independent reviewers and patient and public participation (PPI) groups, who decide whether the study shall be granted ethical approval.
Patients who join the BioResource can be invited to take part in research into multiple disease areas, including Inflammatory Bowel Disease (IBD), Immune-Mediated Inflammatory Diseases (IMID), Mental Health, Rare Diseases, COVID-19 and NAFLD. It is an essential part of research to have a wide range of participants to choose from, as someone with one disease might have the genetic characteristics of interest to support a study into another disease area.
One of the great benefits of the BioResource is that it is a single, centralised source of data, samples and consent. Researchers would usually have to spend significant time and resources to identify participants for their studies. The BioResource eliminates this by recruiting participants with and without health conditions. This year a young person's programme called D-CYPHR, the DNA, Children + Young People’s Health Resource, will be launched nationally, inviting children under 16 to take part in research.
How you can get involved
Patients with any of the common or rare diseases we recruit for are eligible to volunteer for research at the BioResource. You can contact the Birmingham team directly by emailing uhb-tr.nafldbioresource@nhs.net or nbr@bioresource.nihr.ac.uk if you live elsewhere.
Anyone can join the general population group at the BioResource, regardless of your health status. Find out more about how to join the BioResource today.
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Our volunteers help to advance health research that benefits generations to come. Every volunteer makes a difference.