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The Information Standard

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The PKD Charity is committed to producing reliable, good quality and evidence-based health and social care information. All the content on this site within the sections 'About ADPKD' and 'About ARPKD' are reviewed, revised and updated in accordance with the PKD Charity Information Standard Process.

The PKD Process incorporates the NHS Information Standard Principles:

  • Information production - we have a defined process in place that we follow when producing information for the first time and when reviewing it
  • Evidence source - all our information comes from recognised, trusted sources and references are available for each fact sheet on request
  • User understanding and involvement - this ensures that information produced for people and families affected by PKD meets their needs
  • End product - each information piece is checked and read by experts and lay readers for consistency and quality
  • Feedback - we have a process for managing feedback and ensuring that errors or omissions are corrected
  • Review - we aim to review each information piece at least every 3 years and sooner if there is new evidence or information  

Our commitment to producing high quality information is expressed in a Policy Statement, which outlines the criteria we apply when creating and checking information products. These criteria are based largely on the characteristics of good quality health information developed by Angela Coulter in the book 'Engaging Patients in Healthcare' (OUP, 2011, Table 3.1, Loc 1309). Read the PKD Charity Policy Statement here.

Disclaimer

The PKD Charity is responsible for the accuracy of the health and social care information on this website and in printed publications where the Information Standard process has been applied. The NHS, whose principles we have applied, bears no responsibility for costs, losses or damages arising from the information being inaccurate or from us failing to include relevant information.

User-generated information is excluded from the scope of certification: blogs, forums and personal experience pages or stories – except where personal experience information has been produced through a systematic process of validation.

Please contact us if you have any questions about how we produce health and social care information.

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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