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.
- Friedrich’s Ataxia Research Alliance (FARA) provides information about their involvement in the development of clinical management guidelines for Friedrich’s ataxia (FA) and User Guide in: Consensus Clinical Management Guidelines For Friedreich’s Ataxia (FA) .
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.
  - Information about the bracelet is towards the bottom of their Consensus Clinical Management Guidelines For Friedreich’s Ataxia (FA) webpage.
- Some patient groups are also developing applications for smartphones to provide similar information.

Resources

Guideline Development Process

Clinical Practice Guidelines We Can Trust: Standards for Developing Trustworthy Clinical Practice Guidelines (CPGs) National Academies of Sciences, Engineering, and Medicine (link)

Disseminating the Guidelines

Consensus Clinical Management Guidelines For Friedreich’s Ataxia Friedrich’s Ataxia Research Alliance (FARA) (link)