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Patient Led Research Hub

Our Latest News

new PLRH email address!

Thursday September 16, 2021

Update your address books! We’re trying to streamline our accounts, so have created [email protected] to use as our main contact. Please start using this right away for all correspondence, as we will discontinue [email protected] in the coming months, and will no longer have access to the inbox. Drop us a line – we’d love to […]

back to work… slowly!

Friday July 9, 2021

For the past year, PLRH core and patient-led research activities have been put on hold to prioritise covid-related research and clinical care. We are very pleased that we can now slowly start returning to existing projects and accepting new proposals. We also hope to re-visit plans for our Patient-Led Research Conference, maybe even hosting by […]

new PKD publication

Tuesday February 9, 2021

Check out our new publication with Dr Ragada El-Damanawi and the PKD Charity: Developing a patient-centred tool for pain measurement and evaluation in autosomal dominant polycystic kidney disease! The paper discusses how the team developed a new questionnaire-based assessment to reliably measure chronic pain in ADPKD patients. This research helped lead the way to more […]

funding success for Lipodystrophy UK proposal

Wednesday September 9, 2020

We are delighted to announce that one of our longest running projects has been awarded funding from the Addenbrooke’s Charitable Trust! Led by Lipodystrophy UK and supported by the National Severe Insulin Resistance Service and the Newcastle Centre for Fatigue Research, the LiFE study will investigate chronic fatigue in people with lipodystrophies. Unfortunately, many people […]

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 […]