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Proritising ADPKD research

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The PKD Charity is working with the James Lind Alliance (JLA) in a Priority Setting Partnership (PSP) to produce a Top 10 list of the most important research questions about ADPKD (autosomal dominant polycystic kidney disease) that patients, family members, carers and healthcare professionals want answered.

The ADPKD PSP process

This PSP will build on prior work to identify and prioritise the unanswered research uncertainties about the ADPKD care pathway.

Stage 1 – the Steering Group (members are listed below) have agreed the Scope (document below) of the PSP and debated a summary list of unanswered research questions and uncertainties. These questions have been checked against existing research evidence to ensure they are true uncertainties.

Stage 2 – ADPKD patients, family members, carers and healthcare professionals are asked to vote on the most important questions in a priority setting survey, reducing the questions to a shorter list to be discussed at a workshop.

Stage 3 – the highest-ranked 25-30 questions from the survey will be discussed in a workshop to agree the ‘Top 10’ list of priorities. James Lind Alliance advisers will faciliate the workshop.

Stage 4 – the PKD Charity will announce the ‘Top 10’ and publish them on their website and the JLA website. The charity will submit an abstract to UK Kidney Week and share the Top 10 with researchers and funders to address the prioritised uncertainties.

Steering group members

The Steering Group is chaired by a JLA facilitator (Maryrose Tarpey) and supported by an Information Scientist (Ann Daly).

  • Mr Patrick Barton
  • Nurse Specialist Wendy Brown
  • Dr Ragada El-Damanawi
  • Ms Tess Harris
  • Dr Bert Jindal
  • Dr Maryam Khosravi
  • Mrs Gillian Mundy
  • Mrs Natasha O’Brien
  • Professor Albert Ong
  • Dr Albert Power
  • Mrs Jane Pugh
  • Mr Justin Sandifer
  • Dr Richard Sandford
  • Professor John Sayer
  • Dr Roz Simms
  • Mr Peter Storey
  • Professor Pat Wilson
  • Professor Paul Winyard
  • Dr Grahame Wood

ADPKD PSP documents

Steering Group Terms and Reference

Project partners

We’re keen to ensure as many people and organisations participate in the ADPKD PSP as possible.

Please consider joining the PSP as a partner if you have knowledge and experience of ADPKD; or understand the needs of ADPKD patients.

As a project partner, we ask you to help disseminate information about the project and encourage your networks to participate.

Current partners

Kidney Research UK The James Lind Alliance

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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