The PLRH was established in 2015 by members of the Cambridge Clinical Trials Unit (CCTU) from the University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust. In 2022, we shifted focus to primarily support rare disease research. We aim to provide academic expertise in all aspects of research design and conduct, free from a defined research agenda. This expertise is available to UK-based charities and patient groups to support patient-driven research. Our core team includes a trials methodologist, research manager, and administrative support; we have established networks across the UK to access additional research and clinical expertise as required for each project.

We understand that many rare conditions do not have designated NHS care teams. While we require a UK-based patient community, we are happy to collaborate as widely as possible to involve clinical experts from around the globe.

View Our Collaborators

• Beacon for Rare Diseases
• Breaking Down Barriers
• Cambridge Consulting Network
• Cambridge Enterprise (University of Cambridge)
• Cambridge University Health Partners
• CamRARE
• Genetics Alliance UK
• Genomics England
• International Clinical Trials Centre Network
• James Lind Alliance
• National Congenital Anomaly and Rare Disease Registration Service
• NIHR Applied Research Collaboration East of England
• NIHR BioResource
• NIHR Brain Injury Healthcare Technology Co-operative
• NIHR Cambridge Biomedical Research Centre PPI Team
• NIHR Research Support Services
• Rare Disease Research Network (RDRN)
• Rare Disease Research UK (MRC-NIHR)
• RareQoL
• Royal Papworth Hospital NHS Foundation Trust Medical LIbrary
• Share4Rare
• The McPin Foundation
• UK-International Mirror & Action Group for Rare Disease
• University of Cambridge Medical Library
• University of Cambridge Public Engagement Team
• LifeArc
• RareMinds

Governance

PLRH remit and activities are governed by the Cambridge Biomedical Research Centre (Cambridge BRC) and the Cambridge University Health Partners (CUHP) Patient and Public Involvement Research Oversight Committee. Patient organisations maintain a study-specific partnership with the PLRH once a research proposal is agreed.

Support

PLRH infrastructure and core staffing are supported by indirect NIHR (National Institute for Health and Care Research) funding via the Cambridge BRC and support-in-kind from CCTU. The CCTU is a UK Clinical Research Collaborator and a member of the Cancer Research UK CTU group, with accreditation based on a quality management system covering all aspects of clinical trials conduct. The CCTU is a founding member of the International Clinical Trial Centre Network. Patient involvement funds have been kindly received from the East of England Research Design Service (now Research Support Service).

Patient & Public Involvement (PPI)

PPI in healthcare research is defined as research carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them.

In the UK, the NIHR recognises the value of patient insight and requires researchers with public funding to involve patients and the public throughout the research process. Many charities and private funders now also mandate PPI in healthcare research. The patient-driven research method used by the PLRH is a type of PPI, but there are many different opportunities for involvement. If you’d like to learn more about PPI, visit the NIHR’s Learning for Involvement for training and resources. If you’d like to participate in healthcare research as a PPI representative, visit the NIHR’s People in Research page.

PPI is different than joining in a clinical trial as a participant. If you’re interested in being a trial participant, visit the NIHR’s Be Part of Research page. This website provides accessible information on all active, registered clinical research with human participants in the UK. It’s designed to link patients and their clinicians with trials of interest. It’s important to realise that each trial has strict eligibility requirements, so you’ll have to be referred by your doctor and then screened by the research team before taking part. The PLRH cannot register you for a trial.