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Study on arm and hand function in Duchenne
19 August 2011
The department of Rehabilitation of the Radboud University Nijmegen Medical Centre has started a study on arm and hand function in people with neuromuscular disorders.  The first group that will be studied are boys and men with Duchenne muscular dystrophy. It is our intention to also study other neuromuscular disorders which have involvement especially of the arm and hand function during the course of the disease.

For this study, a web-based questionnaire has been developed in cooperation with the foundation Flextension (www.flextension.nl), composed of existing arm-hand-function assessment instruments compromising both basic functional and daily activities. Via a web-based questionnaire a large population can be reached, and even persons with limited arm-hand-function can answer the questionnaire themselves by clicking on the boxes via their computer. In collaboration with the Duchenne Parent Project of several countries, this questionnaire will be sent to boys and men with Duchenne by e-mail with a linkage to the questionnaire.

In the Netherlands, apart from the boys and men with Duchenne, also people with other neuromuscular disorders will be asked to participate via Vereniging Spierziekten Nederland.

Insight will be acquired in the arm-hand-function of the specific diagnosis and the course during the progression of the disease by reaching large groups. This insight will be essential in the development of new arm-orthoses and supportive devices, such as the recently started project McArm (= motion controlled arm support;  www.lifeteczone.nl/cmsdocs/McArm)  of Focal Meditech in which the department of Rehabilitation of Radboud University Nijmegen Medical Centre participates.

Further information can be acquired via Edith Cup (e.cup@reval.umcn.nl) or Imelda de Groot (ijm.groot@reval.umcn.nl

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