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Patient Led Research Hub

Our Latest News

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. […]

INVOLVE conference: Co-production: Teasing out the Tensions

Thursday February 27, 2020

This week we were pleased to attended the latest NIHR INVOLVE conference ‘Co-production: Teasing out the Tensions’. Co-producing healthcare research with patient partners invariably presents challenges and can lead to questions about power sharing, ethics, intellectual property and how co-produced research should be shared across society. This event gathered a range of stakeholders to discuss […]

funding success for Lupus UK proposal

Friday February 21, 2020

We are delighted to announce our latest funding application to Addenbrooke’s Charitable Trust has been approved! Led by Lupus UK, this research project will investigate how people with invisible, fluctuating and long-term health conditions can be supported to remain in employment. We anticipate an August 2020 start date, and look forward to further collaboration with our […]