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Related Experiment Videos

Aligning patients' needs and research priorities towards a comprehensive CF research program.

Jacquelien J Noordhoek1, Vincent A M Gulmans1, Harry G M Heijerman2

  • 1Dutch Cystic Fibrosis Foundation (NCFS), the Netherlands.

Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society
|March 31, 2019
PubMed
Summary

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The Dutch CF Foundation prioritized patient needs in research by fostering collaboration between patients, scientists, and clinicians. This patient-led approach resulted in the successful "HIT CF" research program.

Area of Science:

  • Patient-centered research
  • Cystic Fibrosis (CF) research
  • Health sciences

Background:

  • The Dutch CF Foundation initiated a strategic focus on scientific research over a decade ago.
  • Patient perspectives and unmet needs were systematically identified through a bottom-up approach.
  • Establishing a dialogue between patients, scientists, and clinicians was central to the foundation's strategy.

Purpose of the Study:

  • To align patient-defined research priorities with those of Dutch basic scientists and clinicians.
  • To facilitate a collaborative research environment driven by mutual dependency.
  • To develop and execute a structured, patient-informed research program.

Main Methods:

  • A structured process was employed to define patient perspectives and unmet needs.
Keywords:
Patient participationPatient perspectiveResearch priorities

Related Experiment Videos

  • Patient research priorities were systematically matched with scientific and clinical research agendas.
  • The Dutch CF Foundation actively facilitated ongoing dialogue and collaboration.
  • A five-year research program, "HIT CF," was designed and implemented.

    • Main Results:

    • Successful matching of patient-identified needs with scientific and clinical research priorities.
    • Establishment and maintenance of a sustained dialogue between all stakeholders.
    • Development and execution of the "HIT CF" research program over five years.
    • Significant financial support for the research program was secured from the patient community and stakeholders.

    Conclusions:

    • Patient organizations can effectively drive scientific research by prioritizing patient perspectives.
    • Collaborative models involving patients, scientists, and clinicians are crucial for impactful research.
    • The "HIT CF" program demonstrates a successful patient-centered approach to addressing unmet needs in CF.