Zoekresultaten - 12 results

Eight years after an international workshop on myotonic dystrophy patient registries: case study of a global collaboration for a rare disease.

TREAT- NMD (a global alliance with the mission of improving trial readiness for neuromuscular diseases) and the Marigold Foundation held a workshop of key opinion leaders to agree a minimal dataset for ...

How robust is ACTIVLIM for the follow-up of activity limitations in patients with neuromuscular diseases?

Disorders, Volume 26, Issue 3 (2016) Keywords: Activity limitations Neuromuscular Diseases Patient-reported outcome measure Rasch analysis Abstract: This study aims to investigate the clinimetric properties of ...

Belgisch register van neuromusculaire aandoeningen (BNMDR) 2014 | Resultaten en trends sinds 2010

Keywords: BNMDR neuromusculaire ziekten Register Abstract: Het Belgian NeuroMuscular Disease Registry (BNMDR) is in het leven geroepen op initiatief van het Rijksinstituut voor Ziekte- en ...

Registre belge des maladies neuromusculaires (BNMDR) 2014 | Résultats et tendances depuis 2010

patients atteints de MNM en Belgique. On observe encore une grande disparité entre la population étudiée et la population cible. Health Topics:  Maladies neuromusculaires Neuromuscular diseases ...

The Belgian Neuromuscular Disease Registry (BNMDR) 2014 | Results and Trends since 2010

Keywords: BNMDR Neuromuscular Diseases Registry Abstract: The Belgian Neuromuscular Disease Registry (BNMDR) was set up at the initiative of the National Institute of Health and Disability Insurance of ...

Belgian Neuromuscular Disease Registry (BNMDR)- Resultaten van 2014 en Trends sinds 2010.

Keywords: 2010 Belgian disease EN Neuromuscular disease REGISTRIES Registry result results trend trends Service:  Étude des soins de santé Gezondheidszorgonderzoek Health services research ...

Registre des Maladies Neuromusculaires (BNMDR)- Résultats 2014 et Tendances depuis 2010.

Keywords: 2010 de disease ET Neuromuscular disease registre REGISTRIES Registry result results trend trends Service:  Étude des soins de santé Gezondheidszorgonderzoek Health services research ...

Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR).

Belg, Volume 115, Issue 2, p.97-104 (2015) Keywords: Adult Belgium cross-sectional studies Female Humans Male middle aged Neuromuscular Diseases Online Systems prevalence Rare diseases REGISTRIES ...

The TREAT-NMD DMD Global Database: analysis of more than 7,000 Duchenne muscular dystrophy mutations

Mutation Neuromuscular disease Neuromuscular Diseases observed organization Planning Point Mutation Research Research Support SB- IM Sites STORAGE Therapy Type UK Universities university Abstract: Analyzing ...

Belgisch register van neuromusculaire aandoeningen (BNMDR) 2013 | Resultaten en trends sinds 2010

Keywords: BNMDR neuromusculaire ziekten Register Abstract: Het Belgian NeuroMuscular Disease Registry (BNMDR) is in het leven geroepen op initiatief van het RIZIV en ligt in de lijn van de ...

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