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.