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 charities and patient groups to support patient-centred (patient led or co-produced) research. Core membership consists of an experienced clinical trialist and a full time research manager, with access to and input from statisticians, health economist, grants officer, and other expert members of the CCTU and School of Clinical Medicine.

We aim to collaborate with as many external experts as possible, spanning medicine, academia, research and industry. Many of these collaborators provide core assistance as needed for a wide range of research ideas. The PLRH also seeks out specific experts for each proposal focus.

View Our Collaborators

• Beacon for Rare Diseases
• Breaking Down Barriers
• Cambridge Enterprise (University of Cambridge)
• Cambridgeshire and Peterborough NHS Foundation Trust
• CamRARE
• Genetics Alliance UK
• Genomics England
• International Clinical Trials Centre Network
• 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 Centre for Engagement and Dissemination
• Rare Disease Research Network
• Rare Disease Research UK (MRC-NIHR)
• RareQoL
• Royal Papworth Hospital NHS Foundation Trust Medical LIbrary
• The McPin Foundation
• University of Cambridge Medical Library
• University of Cambridge Public Engagement Team

Governance

The PLRH is part of the CCTU, and its strategy and governance are reviewed 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 and oversight role once a research proposal has been submitted.

Support

The PLRH receives indirect funding from the NIHR via the 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 (ICN). 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 National Institute for Health and Care Research (NIHR) recognises the value of patient insight and requires researchers with public funding to involve patients and the public throughout the research process. The patient-led and co-production methods used by the PLRH are considered one type of PPI, but there are many 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.