Publications
We believe research should be transparent and accessible, especially for patient populations that may benefit from new outcomes. We aim to publish all PLRH work in peer-reviewed, free-to-access journals. After publication, we work with your patient organisation to tailor reports and summaries to share widely through newsletters, forums and social media. Please note, the articles listed here are only those that include a core PLRH member as co-author; many of our projects continue to develop without our active involvement, particularly when findings lead to new collaborations and direction.
We share our own updates through quarterly newsletters. Sign up to our mailing list here, and scroll down for links to previous issues.
February 2021 :: Pain in Polycystic Kidney Disease
Developing a patient-centred tool for pain measurement and evaluation in autosomal dominant polycystic kidney disease
El-Damanawi R, Lee M, Harris T, Cowley LB, Scholtes I, Bond S, Sandford RN, Wilkinson IB, Casteleijn NF, Hogan MC, Karet Frankl FE, Hiemstra TF. Clinical Kidney Journal (2021) doi.org/10.1093/ckj/sfaa259
February 2020 :: Ketogenic Diet Therapy in R(20)
Assessing the role of ketogenic dietary therapy in ring chromosome 20 syndrome: a patient led approach
October 2019 :: DRINK Randomised Feasibility Trial
High water versus ad libitum water intake for autosomal dominant polycystic kidney disease: a randomised controlled feasibility trial
July 2018 :: PLRH Commentary
Inverting the patient involvement paradigm: defining patient led research
Mader LB, Harris T, Kläger S, Wilkinson IB, Hiemstra TF. Research Involvement and Engagement (2018) 4:21. doi.org/10.1186/s40900-018-0104-4
May 2018 :: DRINK Randomised Feasibility Trial
Randomised controlled trial of high versus ad libitum water intake in patients with autosomal dominant polycystic kidney disease: rationale and design of the DRINK feasibility trial
El-Damanawi R, Lee M, Harris T, Mader LB, Bond S, Pavey H, Sandford RN, Wilkinson IB, Burrows A, Woznowski P, Ben-Shlomo Y, Karet Frankl FE, Hiemstra TF. BMJ Open (2018) 8:e022859. doi:10.1136/ bmjopen-2018-022859
June 2017 :: DRINK Randomised Feasibility Trial
Patient survey of current water intake practices in autosomal dominant polycystic kidney disease: the SIPs survey
El-Damanawi R, Harris T, Sandford RN, Karet Frankl FE, Hiemstra TF. Clinical Kidney Journal (2017) 10:3. doi: 10.1093/ckj/sfw153