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Use of Ultra-high Field MRI in Small Rodent Models of Polycystic Kidney Disease for In Vivo Phenotyping and Drug Monitoring
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Research priorities for autosomal dominant polycystic kidney disease: a UK priority setting partnership

Tess Harris1, Hannah R Bridges2, Wendy D Brown3

  • 1Polycystic Kidney Disease Charity, London, UK tess.harris@pkdcharity.org.uk.

BMJ Open
|June 15, 2022
PubMed

Insights

Autosomal dominant polycystic kidney disease (ADPKD) research priorities were identified by patients, carers, and healthcare professionals. Top concerns include slowing disease progression and improving early treatment and care organization for better outcomes.

Area of Science:

  • Nephrology
  • Genetics
  • Public Health

Background:

  • Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited kidney disorder, causing 7-10% of kidney failure cases.
  • Current research on ADPKD is extensive, but funding allocation lacks clear priorities.
  • A priority setting partnership was established to identify and rank key research uncertainties in ADPKD care.

Purpose of the Study:

  • To identify and prioritize research questions in Autosomal dominant polycystic kidney disease (ADPKD) care.
  • To involve patients, carers, and healthcare professionals in setting research priorities.
  • To guide future research funding for ADPKD to maximize improvements in patient outcomes.

Main Methods:

  • Adapted James Lind Alliance (JLA) methodology was employed.
  • Uncertainties in ADPKD care were identified from literature and refined into indicative questions.
  • A survey and online consensus workshop involving patients, carers, and healthcare professionals established the top 10 research priorities.

Main Results:

  • 117 uncertainties were refined into 35 indicative questions, with 17 shortlisted via survey.
  • The top 10 research questions were agreed upon by workshop participants.
  • Key priorities focused on slowing ADPKD progression, identifying candidates for early treatment, and optimizing care organization.

Conclusions:

  • The identified priorities reflect the multifaceted challenges of living with and treating ADPKD.
  • Future ADPKD research funding should align with these patient- and clinician-identified priorities.
  • Focusing on these key areas can maximize improvements in ADPKD outcomes.
Abstract

Keywords:
hepatologynephrologypain management

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