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Patient Led Research Hub

Our Latest News

BSSA 2018 Research Award success

Saturday October 6, 2018

Our co-produced funding application to the British Sjögren’s Syndrome Association’s 2018 Research Award has been successful! This grant will help us create an online patient portal to allow patients to interact with their own health data, use symptom trackers, and input trial data. We aim to use the portal as a platform for a patient led […]

NCCPE Public Engagement Professionals Network

Tuesday September 25, 2018

The National Coordinating Centre for Public Engagement is launching a public engagement professionals network (PEP Network) on 1 October. The Network aims to support public engagement professionals across the UK working in higher education and research to access training and development, peer support, and to share resources. We attended an information ‘taster session’ in Cambridge, […]

KRUK Fellows Day 2018 award

Monday September 10, 2018

We are very proud of Dr Ragada El-Damanawi for winning the Trevor Cook award for best communicated research from a patient’s perspective, for her oral presentation on the DRINK trial at the Kidney Research UK Fellows Day! Ragada, PKD Charity and its patient members, and the Cambridge research team have done an excellent job collaborating throughout […]

ASN Kidney Week

Friday August 10, 2018

Dr Ragada El-Damanawi will be presenting her work on the DRINK trial at the upcoming American Society of Nephrology Kidney Week in San Diego! Preliminary analysis of DRINK, proposed and co-produced by the UK PKD Charity, is very promising. Watch out for her poster ‘The DRINK Randomised Feasibility Trial: Determining feasibility of Randomisation to high versus […]

My Potassium Sensor

Tuesday August 7, 2018

Would monitoring your blood potassium at home be helpful? We’d love your feedback via this 5 minute, anonymous survey to help us develop a new hand-held device, developed with Gitelman Syndrome UK and the Department of Chemistry, University of Cambridge.

new PLRH publication

Tuesday July 10, 2018

Check out our first open access PLRH commentary: Inverting the patient involvement paradigm: defining patient led research. We explain our new patient led research model, and review our early successes and challenges. Published by BioMed Central Research Engagement and Involvement journal.