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Patient Led Research Hub

Our Latest News

NIHR Public Partnership funding success!

Wednesday April 5, 2023

We are very excited to finally be able to share our NIHR Public Partnership news! In December 2022 we submitted an application with CamRARE (Cambridge Rare Disease Network) to work with the rare disease community (people living with a condition, their families and carers, patient representatives, advocates) to create a new rare disease research network. […]

PLRH quarterly: January

Tuesday January 10, 2023

Happy 2023! May it be a happy, healthy year for you and yours. We’ve done a quick roundup of 2022 in our latest newsletter – have a read here. We’ve got so many exciting things in store for 2023 – consider signing up to our mailing list here to keep up to date!

It’s all about RARE!

Friday October 14, 2022

We’re delighted to announce our shift in focus to rare disease! Many people living with a rare disease and their families struggle with significant unmet medical needs, and few have the opportunity to be involved in research. Given that over 70% of our feasible proposals have come from small rare disease groups, we’ve decided to […]

PLRH quarterly: October

Tuesday October 11, 2022

Time for us to announce our shift to rare disease! Over 70% of our proposals come from small rare disease patient groups or charities, so we’ve decided to focus on this under-served community. We look forward to working with the Cambridge Rare Disease Network, Beacon for Rare Diseases, and many others to learn how we […]

Anonymous surveys for NF1 patients & clinicians

Monday August 22, 2022

Are you or someone you care for affected by Neurofibromatosis Type 1 (NF1)? Do you provide healthcare for someone with NF1? We’re helping Childhood Tumour Trust learn more about the current pathway of care for people with NF1 in the UK. If you’re involved in either receiving or providing care, please consider completing our surveys. […]

ADPKD top 10 research priorities published

Monday July 25, 2022

PKD Charity and the autosomal dominant polycystic kidney disease (ADPKD) community paired up with NIHR’s James Lind Alliance on a Priority Setting Partnership (PSP). They’ve agreed their Top 10 research priorities, and have published it in BMJ Open! Have a read here. We’re pleased to have supported PKD Charity with two relevant patient-led projects; hopefully […]