The UK Clinical Research Collaboration (UKCRC) Tissue Directory is a free online resource that catalogues the different types of human sample resources across the UK (biobank, cohort, biorepository, clinical trial etc). The directory has characterized over 180 sample resources, hosting over 400 sample collections, covering 136 diseases and counting.
User controlled research / user led research
User controlled research is research that is actively controlled, directed and managed by service users and their service user organisations. Service users decide on the issues and questions to be looked at, as well as the way the research is designed, planned and written up. The service users will run the research advisory or steering group and may also decide to carry out the research. Some service users make no distinction between the term user controlled and user led research, others feel that user led research has a different, vaguer meaning. They see user led research as research which is meant to be led and shaped by service users but is not necessarily controlled by them. Control in user led research in this case will rest with some other group of non-service users who also have an interest in the research, such as the commissioners of the research, the researchers or people who provide services.
A user researcher is someone who uses or has used health and/or social care services because of illness or disability, who is also a researcher. Not all researchers who use health or social care services call themselves user researchers. Calling yourself a user researcher is making a statement about your identity as a service user as well as a researcher.