LGMD2A Patient Registry
By registering in the LGMD2A/calpainopathy screening database you will be providing us with certain individually-identifiable healthcare information. We will hold your individually identifiable information in the strictest of confidence, and will only use or disclose it to others with your specific consent.
By providing your individually identifiable health care information in the following Patient Registration, you authorize the use of such data in our aggregate patient registry, which is used to document the prevalence of this condition and may be used for research purposes to identify possible diagnostic or treatment options. We may contact you to discuss your registration, and you always have the right to either decline to discuss it further or to withdraw this authorization, in which case we will remove your individually identifiable information from the registry. Your registration will be stored in a secure electronic database.
To make sure that the data in the registry is correct and up to date, it is essential that we update it regularly. To do this, we may send you follow-up forms periodically asking you to tell us about any changes in your medical condition or other details that might occur, for example change of contact information or loss of ambulation.
Please confirm that you have read the above privacy statement and understand that your information may be used in aggregate for research purposes, but that no personally identifiable information will be disclosed without your consent:
I am filling out this form on behalf of:
A family member
If you are filling out this form on behalf of a family member, please provide your own full name. Completed by:
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