Research registries to recruit participants

In the UK, digital tools have been developed to increase the speed and efficiency of clinical trials by enabling researchers and commercial sponsors to use data to:

  • assess the feasibility of proposed research
  • identify and engage research participants

Different tools are provided by different organisations - or ‘data providers’. Each is unique in the way it works, and with the data it enables researchers to access. For example, some are purpose designed research registries or bio-resources, whereas other tools enable analysis of anonymised patient data.

Key questions

Research registries enable patients and members of the public to proactively volunteer to take part in research. The registry records their preferences and consent to be contacted about research opportunities. Researchers can add their study to the registry and information about the study will be pushed to relevant registrants, who can then decide whether or not to follow up the opportunity. Researchers may also be able to query the registry to analyse the appetite for research in a specific condition or therapeutic area.

If you intend to use a research registry for recruiting participants, ensure it is specified as part of your recruitment strategy when you seek regulatory and ethics approvals.

  • Feasibility: use data to inform your decisions
  • Efficient: minimise the resource required to identify large numbers of potential participants
  • Targeted: focus your recruitment strategy on research-engaged volunteers
  • Free: the service is free

Be Part of Research - the UK's primary research registry

The Be Part of Research registry is the first UK-wide registry for all health and care conditions. It is linked to the NHS app. Patients and members of the public can register their interest in, and search for, research opportunities according to the NHS A-Z list of conditions. They can also sign up as a healthy volunteer.

Researchers, including commercial sponsors, can query the registry to analyse the appetite for research in a specific condition or therapeutic area. You can also access the research-engaged volunteers to facilitate swift and efficient recruitment to a range of research, from lifestyle questionnaires to clinical trials.

Potential volunteers can be identified for your study using a range of criteria including age, ethnic group, sex, location and health condition. You can also target different settings such as hospitals, GP (general practice) surgeries, in care homes or community settings, or at home. The most suitable volunteers for your study are invited to take part via email.

  • Your study must have Research Ethics Committee approval to use the service as a recruitment tool. (We can support you in any additional ethics submissions you might need to do.)
  • Your study must have a dedicated point of contact such as a pre-screener or website for interested volunteers to engage with your research team.

Commercially-sponsored studies that are registered on www.clinicaltrials.gov or ISRCTN registry and taking place in the UK, are automatically added to Be Part of Research. This ensures sponsors retain control what information is in the public domain. 

All NIHR Clinical Research Network Portfolio studies that are categorised as non-commercial are automatically included on Be Part of Research. 

Learn more on our Be Part of Research website or email the be Part of Research Volunteer Service Team to request these services: bepartofresearch-volunteerservice@nihr.ac.uk

As with most of the support we provide, this service is free for commercial sponsors. 

Join Dementia Research

Therapeutic-specific registries can also be accessed in the UK. We run Join Dementia Research in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society. The service enables people to register their interest in participating in dementia research and be matched to suitable studies. Researchers can:

  • identify potential participants
  • screen and contact volunteers
  • run feasibility tests for future studies

Learn more on the Join Dementia Research website.

More digital engagement tools

Funded or part-funded by the NIHR

Funded by other providers

Regional research registries

Regional options like Research+Me (North East England) and Research As One (City of Research collaboration in Bradford) may be relevant, depending on your site selections.

More information

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Services and support for the life sciences industry

You can also contact us to discuss your needs. Fill out our contact form to request a chat with our team. We aim to reply as soon as possible and always within two business days.

Contact the Industry team

 

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