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Research

Laboratory

ADPKD research priorities

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The views of people affected by ADPKD are vital when deciding what to research. We asked the James Lind Alliance (who specialise in prioritising research) to help us prioritise the views of people affected by ADPKD (either directly or due to ADPKD in their family) and healthcare professionals.

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SONG Initiative

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SONG - Standardised Outcomes in Nephrology - Initiative

The Standardised Outcomes in Nephrology (SONG) Initiative unites patients, family members, caregivers, and health professionals in partnership to establish core outcome sets in chronic kidney disease (CKD) for use in clinical trials and other forms of research.

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PKD Charity Bio-resource Bank

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The PKD Charity Bio-resource Bank was established at UCL Centre for Nephrology, Royal Free London NHS Foundation Trust in 2011, supported by a grant from the PKD Charity – the first solo research grant awarded by the charity in the UK.

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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