The British Pakistani community has a high incidence of rare genetic disorders. Families affected by these disorders can spend years in search of a precise genetic diagnosis. Research into rare genetic disorders within the British Pakistani community may help provide British Pakistani couples with better information about their chances of having a child with a rare genetic disorder.
Are you of Pakistani heritage?
Do you have a child with a rare genetic disorder?
If so, we would like to invite you to join a discussion group to share your thoughts on genetic research in people of British Pakistani heritage which will look at the impact of marrying a close relative or someone from the same biraderi, on the chance of having a child with a rare genetic disorder.
How will this help? We hope that the research we are proposing will enable families to receive more accurate advice about their chances of being affected by rare genetic disorders. We value your thoughts on whether the kind of research we are proposing would be helpful to the British Pakistani community. If so, we would like your advice on how best to communicate our research and findings within the community.
Confidentiality: We are aware that this discussion will focus on sensitive topics. What you tell us is confidential and will not be disclosed to anyone outside the research team. Your name will not be mentioned in any reports or papers, nor will any other detail that could lead to you being identified.
Who is running this discussion group? This is being facilitated byresearchers from the Wellcome Sanger Institute near Cambridge and medical/genetics professionals from Leeds Teaching Hospital and Guy’s Hospital in London, together with the charity Social Action for Health.
Practicalities The session will take place over video conference (Zoom) and will last 1.5 hours, with about 30 minutes of reading preparation to do beforehand. All attendees will receive a £50 Love to Shop voucher in gratitude for their time and input.
What are the risks and benefits associated with this study? There are no risks or direct personal benefits for you in taking part, but we hope to gain valuable information to help us plan our research in accordance with the needs of the community.
How do I take part? To find out more please email Grainne Colligan on email@example.com, Dr Saghira Malik Sharif on firstname.lastname@example.org or Dr Shwetha Ramachandrappa on Shwetha.Ramachandrappa@gstt.nhs.uk.
Your contribution will shape the research we do and how we communicate it.