Clinical Patient Management System for ERNs

Provided by Clinical Patient Management System (CPMS)

The Clinical Patient Management System (CPMS) is a secure and fully GDPR compliant IT platform aiming to facilitate the cross-border discussion of rare clinical cases.
The platform is supervised by the Directorate General for Health and Food Safety (DG SANTE) of the European Commission and funded under the EU4Health Programme.
The CPMS 2.0 is open source, distributed under the EUPL license.

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MD-NET – Network for Muscular Dystrophy

Provided by MD-NET

MD NET

Guidelines and advice for professionals and patients
Best Practice Guidelines on molecular diagnostics in Duchenne / Becker muscular dystrophies (2010)
Diagnosis and management of Duchenne muscular dystrophy
Consensus statement for standard of care in spinal muscular atrophy (2007)
Heart failure DEGAM guideline No. 9 (2006)
Diagnostics and therapeutic approaches for mitochondrial disease in children and adolescents – S2 guideline (2009)
Diagnosis of myopathies (2008)
Guidelines for the molecular genetic diagnosis of muscular dystrophies Duchenne and Becker (1999)
Consensus statement on standard of care for congenital muscular dystrophies (2010)

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