01223 274570 Submit Your Own Research Idea

Patient Led Research Hub

Our Latest News

new proposal from Pitt Hopkins UK

Thursday April 30, 2020

Members of Pitt Hopkins UK contacted the PLRH in December 2019, interested in learning more about breathing abnormalities in Pitt Hopkins Syndrome (PTHS). We are pleased to announced we’ve now completed our feasibility assessment, and look forward to taking this project forward with Pitt Hopkins UK along with geneticists and respiratory experts from Cardiff and […]

Creative Encounters award for My Sjögren’s Diary

Tuesday April 7, 2020

Congratulations to Sjögren’s Cambridgeshire for their hard work developing My Sjögren’s Diary! The Diary is nearly complete and will be a safe, secure website and smartphone app for anyone with Sjögren’s Syndrome to log their own symptoms and medication. The group thought this would be a great way to help combat ‘brain fog’ and be […]

new Centre for Engagement and Dissemination

Wednesday April 1, 2020

The NIHR has launched a new Centre for Engagement and Dissemination (CED). The CED will replace INVOLVE, and focus on combining PPI, public engagement, participation, and research dissemination. To coincide with this launch, the NIHR have also released a new website, NIHR Evidence, to publish research summaries in a concise and accessible manner for the […]

PLRH quarterly: April

Wednesday April 1, 2020

COVID-19 has led to a significant shift in research priorities, but we wanted to share some of our successes from earlier in the year. We’re delighted to have been awarded new funding and have published a new open access manuscript, along with some brilliant new proposals that we hope to return to soon! Consider reading […]

funding success for PKD Charity proposal

Tuesday March 31, 2020

We are delighted to finally be able to share the good news that our Chronic Pain in Autosomal Dominant Polycystic Kidney Disease proposal has been funded by the NIHR Research for Patient Benefit programme! Chronic pain is a significant problem for many people with ADPKD, but few receive the healthcare support they need. We aim […]

new r(20) publication

Saturday February 29, 2020

Check out our new publication with Ring 20 Research & Support UK: Assessing the role of ketogenic dietary therapy in ring chromosome 20 syndrome: a patient led approach! A big congratulations to Don and Allison, the charity’s co-founders, for directing this project and presenting our findings at the British Paediatric Neurology Association conference this January. […]