To examine the natural disease course in the hands of persons with DMD and to explore relations between the level of body function/structures and the level of activities, according to the ICF model.
ID
Source
Brief title
Condition
- Neuromuscular disorders
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
The primary goal of this study is to examine the natural disease course in the
hands of persons with DMD. We will evaluate two different levels of human
functioning according to the International Classification of Functioning,
Disability and Health (ICF) model; the dimension of body function and
structures as well as the dimension of activities.
To measure strength and function we will use the recently developed tools
MyoPinch, MyoGrip and MOVIPLATE. To assess the presence of contractures we will
measure range of motion using goniometry. To evaluate and describe activities
we will use several instruments, including Brooke, MACS, PUL, Timed-TIHM and
CUE. We will perform an additional pilot in 5 to 15 patients where we will
measure hand kinematics with a recently designed glove (TU Twente).
Secondary outcome
Secondary goals of this study are to explore relations between these two
levels, the possible difference between the dominant and non-dominant hand, and
possible influence of posture and/or training or splints.
Background summary
The distal muscles of the arm are the best-preserved muscle groups until the
later disease stages in boys/men with Duchenne muscular dystrophy (DMD), as
described in published literature. With the increased life expectancy it is of
great importance to maintain as many abilities as possible to perform
activities of daily living; to manipulate assistive devices and use a mobile
phone for example. Not much is known about the natural disease course in the
hands of persons with DMD and in particular the possible relations between the
different levels of functioning according to the ICF model. In our explorative
study we will search for potential relations between the level of body
structures/functions and the level of activities. The results might influence
and/or increase therapeutic options in the future.
Study objective
To examine the natural disease course in the hands of persons with DMD and to
explore relations between the level of body function/structures and the level
of activities, according to the ICF model.
Study design
An explorative study with a cross-sectional design.
Study burden and risks
Burden associated with participation will be limited, since measurements are
non-invasive. Patients may experience some fatigue and/or muscle pain. Since
there is no training in our study we believe this possibility is very small.
Stieltjesstraat 95
Nijmegen 6511AJ
NL
Stieltjesstraat 95
Nijmegen 6511AJ
NL
Listed location countries
Age
Inclusion criteria
A DNA-established diagnosis of DMD
Informed consent
Exclusion criteria
Presence of other disabling disease(s) with (major) influence on strength, mobility or activities, especially concerning the hand.
Unable to cooperate with or understand testing
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL52246.091.15 |