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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.

An outcome is a measurable effect that a treatment has on a patient. This can be a drug or other therapeutic intervention. A core outcome set is a standardised set of outcomes that all stakeholders agree are critically important to measure and report in all trials. Using core outcomes means that trial results can be easily compared. They can also be used in guidelines to help patients, families, and their clinicians make informed decisions about treatments.

SONG is currently recruiting patients, families and clinicians to help develop core outcomes for children and adolescents (SONG-KIDS). 

Read more about all SONG projects here.

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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