NIHR BioResource: Sample holding

The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022. The NIHR BioResource acquires samples at recruitment for each participant recruited. With the exception of the GLAD study, which posts saliva kits direct to participants’ homes, the preferred sample collection is 3 blood tubes – see https://bioresourcesupport.org.uk/live-samples/ - from which DNA can be extracted, and plasma and sera stored. In many clinics, the NIHR BioResource blood draw follows immediately the blood collection for routine healthcare purposes. In the case of children, less blood will be taken, down to 1mL. The Technical Metadata describes the standard used by RD-Connect, the EU-wide Rare Disease biobank consortium - https://samples.rd-connect.eu/menu/main/home. During 2020, this will be replaced by an API from the UK CRC Tissue Directory, as using this discovery tool is a condition of running a Research Tissue Bank in the UK.