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Patient Led Research Hub

Our Research

We support any technically feasible research idea, on any rare disease topic.

Prior to 2022, we supported any healthcare topic, so some projects relate to common conditions. Click the headers to learn more. 

Current Partnerships

Once the research question is established, clinical trialists and medical experts conduct a preliminary assessment. The PLRH ethos is that, if a proposal is feasible and addresses an unmet need, it should be supported. Feasible ideas might require extensive background and design work to prepare for a funding application. Along with our patient partners, external experts and national research groups are invited to contribute to project development. This multifaceted approach enables competitive applications to public funders, research charities or industry partners.

Previous Partnerships

If funding is achieved, projects become active and as independent as possible to reallocate PLRH resources to new proposals. The PLRH can stay involved if required, but usually the study is conducted by the research team with the patient group in a leadership role. Ideally each project continues to evolve after the initial proposal is addressed. The PLRH isn't necessarily involved in these next steps, but we try to provide current updates and contact details to encourage further participation.

Making Connections

If it becomes apparent that the proposal aligns with ongoing research efforts, we do our best to connect the patient group with UK-based investigators. We're also often approached by patient groups with well established research proposals seeking a clinical or academic partner. We try to support these proposals on a case-by-case basis with tailored expertise and new partnerships sought through our organisational networks.