How Are CF Clinical Care Guidelines Developed?

To help inform the standard of care delivered at accredited care centers, the CF Foundation brings together committees of subject matter experts to write guidelines on topics related to the care of people with cystic fibrosis. Committee members include doctors, nurses, respiratory therapists, dietitians, social workers and people with CF and their families.

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Where appropriate, the Foundation may refer to or modify existing guidelines from other professional organizations. The Foundation supports the development of the following types of guidelines:

  • Evidence-based guidelines developed from a systematic review of the best available evidence.
  • Consensus-based guidelines developed primarily from the opinions and experience of experts.

CF clinical care guidelines are developed for members of the CF community, which includes health care professionals at CF care centers, other health care professionals who provide care to people with CF, as well as people with CF and their families.

CF Clinical Care Guidelines Developed by a Committee of Experts

Development of CF clinical care guidelines is informed by the CF Foundation's Guidelines Steering Committee. Members of the Steering Committee represent stakeholders from the CF community, including health care professionals who provide care to people with CF, people with CF and their families and CF Foundation staff. The Steering Committee also includes the current chairs of the two standing guidelines committees (Pulmonary and Nutrition) and representatives to the CF Center Committee.

The Guidelines Steering Committee informs the development of CF clinical care guidelines by:

  • Identifying gaps in existing care recommendations and proposing topics for guideline development.
  • Determining whether guidelines should be updated based on new medical evidence.
  • Prioritizing the sequence of guidelines development to ensure topics are timely and relevant.
  • Nominating members to serve on individual guidelines committees.

A guideline development committee is convened for each new clinical care topic. Members from the CF community are invited to apply to serve as guideline committee members and are selected based on their expertise on that topic.

Committee members represent different disciplines, care centers and perspectives and are expected to:

  • Participate in refining clinical questions.
  • Critically review all material and evidence reports provided by a systematic review team.
  • Draft recommendation statements with other committee members.
  • Draft summaries of the evidence and rationale in support of care recommendations.
  • Review comments from the peer review process and assist in subsequent revisions.
  • Provide input and participate in the dissemination of the guidelines.

Members may not participate on either the Steering Committee or an individual guidelines committee if they have a conflict of interest, which means they have a financial interest in a company with relation to the guideline topic. Conflicts of interest may also occur when a member has an ongoing consulting relationship with a company that produces a drug or device being reviewed. Committee members must submit written statements of real or apparent conflicts of interest. The statements are reviewed and considered by the CF Foundation.

Selecting Topics for Clinical Care Guidelines

Careful reviews of the CF clinical care guidelines include determining if gaps exist where there are no relevant guidelines or if guidelines are considered out of date. Individuals may also submit topics through their representative on the Center Committee.

The Steering Committee considers and prioritizes topics for guidelines development, based on a number of factors, including whether there are existing guidelines and when they were developed; any controversy or ambiguity on best practices; and the potential impact of guidelines on a specific topic to prompt change in practice and enhance the care of people with CF. The CF community is actively encouraged to provide input on the prioritized list of topics.

Steps for Developing Clinical Care Guidelines

Steps for developing CF clinical care guidelines include:

  1. Develop and refine questions:
    Specific questions are developed for each topic, using the PICO (Population, Intervention, Comparison, Outcome) model or other relevant method. Questions are refined by the members of the guidelines committee through a review of preliminary search results and extensive discussion.
  2. Assess evidence:
    For evidence-based guidelines, the assessment of evidence is explicit and includes completing a systematic review. Systematic reviews inform the discussions and decisions of the guidelines committee in drafting the recommendations.
  3. Draft recommendations:
    Statements are drafted by members of the guidelines committees and, for evidence-based guidelines, are accompanied by grades of the evidence, using a grading system such as that developed by the U.S. Preventive Services Task Force.
  4. Distribute for public comment:
    Prior to publication, draft guidelines are distributed to the CF community, including people with CF and their families, for public comment. Contact to learn more about participating in a public comment period.
  5. Dissemination:
    The guidelines are disseminated to health care providers as well as to people with CF and their families.

All guidelines are reviewed several years after the release date to determine if an update is needed. In addition, updates may be triggered by a specific event or development, such as new medical research. The CF Foundation Guidelines Steering Committee determines when an update is required.

Guidelines are disseminated in a number of venues and in a number of formats including:

  • On a password-protected website to CF care center staff, known as PortCF.
  • In the peer-reviewed literature.
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