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The purpose of the International Spinal Muscular Atrophy Patient Registry is to provide a
resource by which individuals and families affected by SMA and researchers
interested in studying SMA can come into contact with one another.
Investigators who are interested in SMA research need access to information
concerning SMA patients and families. It is important to establish a system
whereby scientists, clinicians and families with SMA can get in touch with each other.
The SMA Patient Registry makes this happen.
By registering information with the SMA Patient Registry you are in no
way committing yourself to participate in any research project. Your
information simply allows us to notify you of any research projects which
you or a family member may qualify to participate in, should you choose to
do so. Under NO circumstances will your name be released to a researcher
without your permission. Should a researcher wish to contact a family such
as yours, we would first inform you of the study and then if we receive your
permission to release your name to the researcher, we will do so. It is also
important to note that research studies often have multiple criteria that an
individual must meet in order to participate. Therefore, you may receive
letters describing research studies for which you are not eligible.
Even if you do not participate in an actual research study, the
information you provide, by completing the patient questionnaire, will be
coded so that it can be entered into a secured computer database and pooled
with information from other individuals and families with SMA. We are then
able to provide researchers with important statistical data without using
names.
If you wish to participate in the Spinal Muscular Atrophy Patient
Registry, please contact Connie Garland at
Indiana University by phone at (317) 274-5745 or by email at
cjgarlan@iupui.edu
and she will mail you a roster packet. (Or
see the Registry Information Download below and simply download the forms, fill them in and mail them.)
Frequently Asked Questions:
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Question: I participated in the Indiana SMA roster some
time
ago. Should I still fill this out?
Answer: Yes, please. The questionnaire has been updated with
many new questions, new in the Summer 2002 registry.
Question: My child with SMA is deceased. Should I participate?
Answer: No, this roster is intended for people who are
currently alive.
Question: When will you have these forms available in other
languages?
Answer: They are now available in French,
Spanish and German.
Registry Information Download
- Instructions:
Download all FOUR forms, then read and complete them and mail them to
this address:
- SMA Patient Registry - attn. Connie Garland
Indiana University School of Medicine
Dept of Medical and Molecular Genetics
975 West Walnut St
Indianapolis, IN 46202-5251
They are available in Acrobat Reader (.pdf) format. If you
have any difficulties, or need a different format, please contact bettylou@fsma.org
for help.
There are 5 sections. Simply click to open or right-click to
save.
- Invitation Letter (contains
explanations)
- Informed Consent form (both
pages must be
signed and sent with the questionnaire)
- Authorization for the Release of
Health Information for Research form (all pages must be
signed and sent with the questionnaire)
- Patient Questionnaire (the
survey for the registry)
- Medical Consent form (allows your
doctor to release records to registry - please complete and sign)
Updated February 5, 2004
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