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Funding awarded to landmark research project studying chronic pain in ADPKD

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We’re delighted to announce a major award from the National Institute for Health Research (NIHR) - the nation's largest funder of health and care research - to study pain in Autosomal Dominant Polycystic Kidney Disease (ADPKD).

A potential game-changer, EASE-PKD is the first large scale study aimed at identifying and characterising the chronic pain known to affect up to 3 in 5 (60%) of ADPKD patients and a commonly reported symptom. Not only does pain have a significant impact on people’s quality of life, but also carries grave economic and operational consequences for the NHS, due to repeated, often prolonged, hospital admissions. Kidney cyst–related pain was also the highest rated patient-reported outcome in the SONG-PKD core outcomes survey. Yet despite the scale of the problem, to date there has been little research on the subject.

Initiated and led by the PKD Charity, and Drs Thomas Hiemstra and Ragada El-Damanawi from the University of Cambridge and Cambridge University Hospitals NHS Foundation Trust – the study has been developed in partnership with expert patients, clinicians, academic researchers and statisticians.

Primarily, EASE-PKD seeks to determine the - currently undefined - causes of chronic pain in ADPKD, pain intensity and how people respond to drug therapies. Pain can present in early stages of ADPKD and people often find it difficult to communicate its intensity to their doctors. Ultimately, understanding these unique characteristics will help develop better, more targeted management and treatments for resolving the burden on patients and clinicians alike.

To address the current limitations, EASE-PKD will be facilitated by a bespoke data Patient Portal, hosted by the Cambridge Clinical Trials Unit (CCTU), and includes a new, bespoke ADPKD Pain Assessment Tool (APAT). An easy to use interface, accessible via computer, phone or tablet, APAT takes the form of a detailed questionnaire that enables people to log and monitor pain intensity, frequency and quality, as well as plot - on a body map – the site of the pain they experience. 

"Pain is one of the most debilitating and yet under recognised consequences of polycystic kidney disease, and yet we know very little about how best to treat it. This landmark study will allow us to understand PKD pain in great detail, providing a crucial stepping stone towards finding treatments that relieve the pain that so many suffer every day. The PKD charity and the NIHR have been instrumental in making this important research a reality."

Dr Thomas Hiemstra

The study will utilise APAT data in parallel with prescription and other clinical data captured on the Patient Portal, through linkage with routinely collected data sources, the Renal Rare Disease Registry (RaDaR) and PatientView. And as such will marry patient’s own data with linked data in a manner not usually accessible to them.

Six hundred adults with a diagnosis of ADPKD - irrespective of kidney function - will be enrolled in the study, over an 18-month period. They’ll be invited to participate through PatientView, the Registry of Rare Kidney Diseases (RaDaR) and the PKD Charity website. Patients can self register online, direct contact with the local research/medical team, or enrolment by their physician.

EASE-PKD will start in August 2020 with a final report anticipated in March 2023.

"It's great to hear that the EASE-PKD project has been funded by NIHR.  As a PKD patient who’s suffered with pain for over six years now, I've found that pain and its impact on your daily life is still so poorly understood by doctors, as well as by your own family and friends.  It impacts on your work, social life, and your perception of yourself. The funding of this study is a fantastic development, which I'm sure will benefit mine and other PKD patients' lives"

Patient, Gemma Reeves

For further information or if you or your family would like to be considered for the study, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..

Funded by NIHR

The National Institute for Health Research (NIHR) is the nation's largest funder of health and care research. The NIHR:

  • Funds, supports and delivers high quality research that benefits the NHS, public health and social care
  • Engages and involves patients, carers and the public in order to improve the reach, quality and impact of research
  • Attracts, trains and supports the best researchers to tackle the complex health and care challenges of the future
  • Invests in world-class infrastructure and a skilled delivery workforce to translate discoveries into improved treatments and services
  • Partners with other public funders, charities and industry to maximise the value of research to patients and the economy

The NIHR was established in 2006 to improve the health and wealth of the nation through research, and is funded by the Department of Health and Social Care. In addition to its national role, the NIHR supports applied health research for the direct and primary benefit of people in low- and middle-income countries, using UK aid from the UK government.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website
  • KPIN