Action plan 2011-2013
5 - Standards of diagnosis and care
|
||
1 - |
Update standards of diagnosis and careUpdate 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 dystrophyDevelop 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 CareSet 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 standardsEvaluate 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 studiesMake use of patient registries to develop a natural history study. Assess the impact of care recommendations and overcome regional/national differences in outcomes. |
|
|