Our members, or those interested in joining, often have questions about the International SMA Patient Registry. Many of these questions are addressed below.

Who can join the International SMA Patient Registry?
Individuals and family members affected by SMA can join the Registry.

How do I join the Registry?
If you would like to join the International SMA Patient Registry, you will need to fill out a few forms to get started. Forms are available in English, German, Spanish and French. The Informed Consent Form and the Authorization for the Release of Health Information for Genetic Research form are required in order to join the Registry.  The Participant Intake Questionnaire is required in order to participate in the TREAT-NMD global database.  While other questionnaires are optional, we believe that they will provide information that is valuable to SMA research.

• Informed Consent Form
  You will need to read and sign an informed consent form. This form explains your participation in the Registry, what your rights are, and what you can expect as a member of the Registry.
  
  
• The Authorization for the Release of Health Information for Genetic Research
  This form is sometimes referred to as a HIPAA form.  It allows us to collect and store medical information on you.
  
  
• Participant Intake Questionnaire (PIQ)
  The PIQ form is fairly brief and asks basic questions about the person affected with SMA.
  
  
• Family History Questionnaire (Coming Soon)
  This form asks questions about your family members and helps us to build a family tree with which we can easily trace the inheritance of SMA within your family.  Although this form is optional we believe that it provides important research information.
  
  
• Affected Questionnaire (Coming Soon)
  This questionnaire asks more in depth questions about various symptoms, treatments and experiences with SMA.  Although this form is optional we believe that it provides important research information about the clinical history of SMA and may provide vital information to researchers.
  
  
• Annual Update Form
  Once a year you will be asked to complete this form which will allow us to update information about your family and provide a means for ensuring that we have correct contact information for you.

To join the Registry, please use the join links to the right or at the top of the page.  

What happens once I join the Registry?
By registering information with the International 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 or other identifying information 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 questionnaires, 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 or other identifying information.