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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)  (3).jpg)
