Action plan 2011-2013

5 - Standards of diagnosis and care

1 -

Update standards of diagnosis and care

Update existing standards of care for DMD and SMA to take account of new data. Update family guides correspondingly.

1.1 -

Establish standards of care for facioscapulohumeral muscular dystrophy (FSHD)

Develop and publish international standards of care for FSHD. Create a patient/family friendly version of the SOC that will empower those with FSHD seeking the best care for themselves. Develop translations of the patient friendly document.

1.2 -

Establish standards of care for inclusion body myositis (IBM)

Develop and publish international standards of care for IBM. Create a patient friendly version of the SOC that will empower those with IBM seeking the best care for themselves. Develop translations of the patient friendly document.

1.3 -

Establish standards of care for myotonic dystrophy

Develop and publish international standards of care for myotonic dystrophy. Create a patient friendly version of the SOC that will empower those with myotonic dystrophy seeking the best care for themselves. Develop translations of the patient friendly document.

2 -

Develop a platform for developing, updating, and assessing Standards of Care

Set up a web-based platform to assist with various aspects of standards of care documentation such as monitoring of quality and version control.

3 -

Assess dissemination and implementation of diagnosis and care standards

Evaluate already developed standards of care for DMD, SMA and CMD. Develop and distribute a questionnaire to families and professionals. Develop and distribute a questionnaire to trial sites.

4 -

Assess standards of care outcome measures in patient registries - natural history studies

Make use of patient registries to develop a natural history study. Assess the impact of care recommendations and overcome regional/national differences in outcomes.