https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/about-our-biomedical-research-centre/nihr-great-ormond-street-hospital-bioresource-centre/
NIHR Great Ormond Street Hospital BioResource Centre
The NIHR BioResource is a nationwide platform that supports research in a number of health conditions. It brings together people who have consented to be approached to take part in research, with researchers who need volunteers for their studies.
It recruits and maintains data and samples donated by healthy volunteers as well as patients with common and rare diseases, all willing to participate in research. Volunteers can be recruited at any one of the centres across the UK, where they consent to be approached to take part in research or for their existing data to be used for research studies.
Researchers who need participants for their studies can then access the BioResource to quickly identify volunteers who fit their eligibility criteria from across the UK. They can use this resource to identify potential participants for studies to understand the links between genes, the environment, health and disease.
How does the BioResource work?
Stage 1: Recruitment
Step 1: Getting consent
After reading information about the BioResource and given the opportunity to ask any questions, volunteers provide consent for their samples and personal information to be collected. Participants will also grant the BioResource team access to their medical records, but these will only be accessed if required for a particular study.
Step 2: Giving a sample
Volunteers are asked to provide a DNA sample to the BioResource, usually blood or saliva. These samples are then sent for testing and storage, and genetic information is added to a national database. Samples are kept separately from personal information such as name, address and date of birth and all information is protected by national governance and ethics policies.
Step 3: Tell us about yourself
Volunteers complete a simple health and lifestyle questionnaire. This helps match volunteers to potential research studies.
Step 4: You’re invited!
If matched, volunteers are contacted to ask if they wish to take part in the study. Each volunteer can be invited to up to 8 studies per year, with a maximum of 4 being face-to-face. There is no obligation to take part in any study that they are invited to, and not taking part in a study will have no effect on their potential to be invited to future studies.
Stage 2: Recall
Researchers working in the NHS, universities or industry can contact the BioResource to request access to the stored genetic information or the original samples for their work. If researchers need people with a specific genetic make-up (genotype) or physical characteristics (phenotype), the BioResource can quickly identify these from the database and contact them to see if they would like to participate. Volunteers may be selected based on variations in their DNA, their health and lifestyle information, their age, their ethnicity or their gender.
About the NIHR BioResource Centre at Great Ormond Street Hospital
The NIHR Great Ormond Street Hospital BioResource Centre is one of many BioResource Centres across England. Each centre coordinates the recruitment of volunteers in their local area. Here at Great Ormond Street Hospital, the BioResource recruits patients and their families to one of two cohorts.
DNA, Children + Young People’s Health Resource (D-CYPHR)
GOSH is proud to be part of D-CYPHR — the DNA, Children + Young People’s Health Resource. Most diseases start in childhood, but most health research is carried out in adults. D-CYPHR wants to change this by supporting health research for children ages 0 – 15, pioneering new treatments and creating better care for children and the adults they will become. Contributions by young heroes today could provide clues for diabetes, mental health conditions, heart disease, rare diseases, immune conditions (and many more).
The project is led by the National Institute for Health and Care Research (NIHR) BioResource in partnership with the NHS, Anna Freud and the University of Cambridge.
Paediatric IBD (PIBD) BioResource
The PIBD BioResource works with children and young people with IBD with the aim of increasing our understanding of IBD and identifying the best treatment options available for children with this condition.
The PIBD BioResource has been endorsed by parent representatives from the start of the project and is supported by a grant from Crohn’s in Childhood Research Association (CICRA), a charity working to improve outcomes for children living with IBD.
Contact
Email: BioResource@gosh.nhs.uk.