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Introducing Project Cure SMA - Fall 2002
As we work together to determine reliable methods of measuring
strength, motor function, pulmonary function and other measures which
contribute to the health of motor neurons in children with SMA, we must
be aware and cautious of experimenting with "safe" drugs that
are currently on the market either by prescription or over the counter
supplements. As with any drug or supplement SMA would be a new
indication and the reaction or interaction in SMA patients may be
different than if one were using that same drug or supplement developed
for another indication. The large majority of medications on the market
do have some incidence of serious medical complications and even death
in rare patient subgroups. Thus, we can anticipate that certain drugs
or supplements may have potential unexpected side effects in SMA
patients.
Project Cure SMA, funded by Families of SMA will be working closely
with all clinical groups performing trials in SMA patients. However, it
is important to realize that while protocols will overlap in terms of
some testing in all patients, such as SMN copy number or MUNE, the
protocols will not be identical between groups and may even vary within
centers depending on the age and ability of the patient. Therefore it
is important prior to participation in any study to be aware that by
taking supplements or drugs in one study or independently may exclude
you from participation at the same time or for some period thereafter
in another study. It may affect the accuracy of our knowledge if we are
not informed of all supplements or medications that you or your child
may be taking. Please be sure to ask about this specifically and let us
know what medications or supplements your child may be taking, so that
we can help you make the best decision regarding the appropriate trial.
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