How It Works
Patient communities often have insightful research ideas that address diagnosis, clinical care, and wellbeing. We partner with support groups and charities to help them develop these ideas, and connect them with likeminded clinical teams. Ideas can go on to be patient-led studies, co-produced with research professionals, or patient-centred investigator-led clinical trials. These efforts help address the mismatch between research ideas that patients prioritise and those investigated in academia or industry, ensuring funded research addresses real-world need.
Between 2015 and 2022, over 70% of our feasible proposals came from rare disease patient communities. These groups are incredibly motivated but usually have minimal funding and limited research opportunities. The challenges of rare disease (e.g. few eligible participants, large geographical spread) demands innovative and adaptive study design, and requires tailored resources to support the unique experience of patients and advocates. In 2022 we decided to shift focus and exclusively support these under-served communities.
Who can submit an idea?
We focus on rare! Patients, carers, advocates, support groups, and charities: if you or a loved one has experience living with a rare condition, we welcome your ideas. Each idea must be supported by a UK-based patient organisation or charity to help with study management and ensure a wide range of patients and families can be involved. Involving a patient network will strengthen the research proposal when applying for funding, and will benefit a study in many ways, including improved design and recruitment. The PLRH requires a UK connection, but please do get in touch regardless of your geography: we’re open to international collaborations, and may be able to help you find a local network. We’ll also do our best to help if your research idea is about a common condition or overarching theme that affects the rare disease community.
Although our we cannot directly support proposals from small businesses, community organisations, or individual entrepreneurs, we encourage you to join the Rare Disease Research Network (RDRN). The RDRN is an online platform designed to encourage cross-sector collaboration and match-make members with similar research interests. You can showcase your research concept via “Advertise a Research Idea’ in the ‘Research’ section. You’ll be able to access resources and expert mentorship to help you develop your idea and build a research team.
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What ideas can you submit?
Any research idea, on any rare disease topic! Our ethos is to develop any project that is technically feasible.
Where do I start?
You can submit a simple idea or detailed project outline online, via email or through direct conversation. There is no set criteria but you may find our summary worksheet helpful to complete (although it’s not required). We’ll discuss your idea with you to make sure we understand it thoroughly before beginning our feasibility assessment. You’re welcome to contact us anytime for more information about the PLRH or research process.
What to expect?
First, we assess whether your idea is practical and technically possible (feasible). If so, we form a study team and support you throughout the whole process, from initial development through reporting the results. We can’t develop research ideas that are infeasible, but you’re welcome to submit another idea at any time. We do our best to keep all communication open and transparent, and the Cambridge BRC PPI Oversight Group is always available to help.
Once we agree to support your idea, we’ll send you our Terms of Reference and answer any questions you may have. We’ll also complete our Patient Involvement Reporting Matrix to make sure your involvement suits your skills and expectations. Our process is flexible, but typically:
We assign a dedicated PLRH member to work with your patient group. You’ll have regular meetings to ensure we understand the research idea and how it will benefit the wider community.
Together, we will complete a review of current research relevant to your idea. We may also involve the wider patient community via a survey, or analyse existing patient-reported datasets to help inform the study design. Sometimes we discover ongoing research that addresses your idea; in this case we do our best to connect you with the research group.
We seek out opinions from healthcare professionals or scientists with relevant expertise to ensure the proposal is reliable and robust.
Many studies require a clinical lead, so we build a research team with the required expertise. This is sometimes difficult for rare conditions with few UK-based specialists.
Together, we apply for a research grant to conduct your study. Although we’ll do our best to assist, we cannot guarantee funding will be secured.
You and the research team conduct the study, and we re-focus our efforts to support another patient group. However, we’re always on hand to help if needed.
What if I don’t know anything about research?
Don’t worry! We don’t require you to have any knowledge of the research process. We provide academic research expertise, and you provide the idea and life experience. Both are equally important to developing clinical trials. Involving people with lived experience from the onset of research greatly improves the quality and credibility of research. You will be able to contribute invaluable knowledge to patient-centred design, communication, and outcomes, and ensure that the recommendations from your study reach all members of your patient organisation.