MDA’s
focus has always been to help improve the quality of life and give hope
to the individuals and families who form our MD community. The initial
information provided to families at time of diagnosis is considered
significant and its accuracy as well as ease of comprehension are the
subject of on going review.
Often a newly diagnosed family seeks an introduction with another family
who share the same experience. Often a newly diagnosed family seeks
reassurance that they are not alone and that other families are also
undertaking a similar journey. The need for accurate demographic data
is necessary to assist MDA to assist families.
While we have previously undertaken several surveys of the MD Community,
these have been of a smaller magnitude than could have been considered
of statistical relevance for a national profile. The aim of this National
Survey of Muscular Dystrophy & Neuromuscular Disorders is to quantify the incidence / prevalence of the many different forms
of MD & NMDs and to provide the relevant demographics for subsequent
analysis. This analysis will be undertaken by social researchers to
maximise the opportunity and the potential returns to the MD community.
In addition to quantifying just how many people within the greater community
are affected by the range of specific disorders encompassed by the MDA,
the MDA wishes to determine several aspects of the population's perceptions,
needs and assess the quality and quantity of information provided during
and post the period of diagnosis.
The National Survey of Muscular Dystrophy & Neuromuscular
Disorders will also provide a data base to assist in determining
the actual "Cost of MD" to the individual, family and society
itself. Based on the outcome of the Survey, the MDA will be better placed
to support and lobby on behalf of the National MD Community and to influence
government, corporate and philanthropic resourcing of medical &
scientific research.
The Success of the National Survey is dependant
on your participation and support!
We invite participation and encourage all members of the National MD
Community to register their expression of interest in the Survey.
To do so, click on the Register for Survey button below to
transfer to our Secure Site. Details will be forwarded in due course.
Confidentiality and your privacy shall be protected at all times.
