Update Clinical Care Guidelines

Disseminating the Guidelines

After publication of new or updated clinical care guidelines, your group can play a role in making sure clinicians treating your disease are aware of and have access to the guidelines. Your group can:

  • Post the guidelines on your website.
  • Use strategies listed in NCATS Toolkit module Develop Programs to Speed Diagnosis: Raising Awareness.
  • Encourage patients who are not being seen by specialists familiar with your disease to share the guidelines with their doctors. 
    • Primary care doctors who may be coordinating a patient’s care may also benefit from the guidelines.
  • Develop a Users Guide to provide additional information about how the guidelines were developed and how they can be used.
  • Consider offering alternative ways for patients to keep a copy of the guidelines with them at all times. For example:
    • FARA, in collaboration with a major pediatric hospital, offers patients with FA a USB bracelet to store the FA clinical care guidelines as well as a patient’s personal medical records. The bracelet provides a physician easy access to all of the patient’s medical information. 
    • Some patient groups are also developing applications for smartphones to provide similar information. 


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