Action plan 2011-2013

5 - Standards of diagnosis and care Biobanks

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.

Michael Rose
(London)
Thomas Sejersen
(Stockholm)
Joanne Auld
(London)


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.

Michael Rose
(London)
Thomas Sejersen
(Stockholm)
Joanne Auld
(London)



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.

Michael Rose
(London)
Thomas Sejersen
(Stockholm)
Joanne Auld
(London)



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.

Joanne Auld
(London)


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.


 
12 Apr 2017