Update Clinical Care Guidelines

Supporting Guideline Development

Depending on who is leading the development of the guidelines, your involvement may differ. However the voice of the disease communities is increasingly essential to the development of clinical care guidelines, especially for rare or complex, challenging-to-treat diseases. Your group can:

  • Organize an executive committee to oversee the development of clinical guidelines.
  • Collaborate with a medical professional society or a group of specialists already in the process of developing guidelines to ensure your disease community’s concerns, preferences, and unmet medical needs are considered. You can provide data from:
    • Patient registry
    • Natural history study
    • Patient preference studies
    • Patient benefit risk studies

Resources

Guideline Development Process
Disseminating the Guidelines
Consensus Clinical Management Guidelines For Friedreich’s Ataxia Friedrich’s Ataxia Research Alliance (FARA) (link)