CLINICAL PRACTICE GUIDELINES
At present, there are no internationally agreed ‘Clinical Practice Guidelines’ for muscle GSDs. This presents a distinct challenge for both patients and clinicians. Inappropriate management can lead to poor patient outcomes and reduced quality of life.
Given that the mainstay for managing muscle GSDs is effective day-to-day self-management, it is vital to have standardization of care based on best practice.
To optimize patient care through access to systematically developed guidelines that outline diagnostic and management recommendations.
We will work towards our goal by:
Working with national GSD organizations, researchers and clinicians to inform the development of Clinical Practice Guidelines.
Communicating the patient perspective .
Providing support/information to all clinicians who care for patients with muscle GSDs.
Disseminating Clinical Practice Guidelines to clinicians.
We are implementing the following outline workplan:
Set out the objectives of the Clinical Practice Guidelines for GSD 5 & 7.
Initiate and recruit an international team to develop them.
Provide leadership and administration to the authoring team.
Select and secure an appropriate journal to publish the Guidelines.
Seek funding support to enable the Guidelines to be made Open Access.
Upon publication, promote and distribute the Guidelines to all relevant groups.