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Application forms for unaffected adults with a family member who has facioscapulohumeral muscular dystrophy (FSHD)
A complete packet for unaffected adults contains 6 items. To accelerate your application, please be sure to download and complete ALL requested forms. If you need assistance with this packet, please call us at the National Registry Office. Thank you!
- The Cover Letter contains important instructions on how to complete the packet. Adult Cover Letter
- The Consent Form describes the Registry and gives us your permission to enroll you. Please print two copies of the Consent - one to sign and return to us and one to keep for your files. Consent Form.
- The Patient Information Form for Unaffected Blood Relatives of Individuals with Facioscapulohumeral Muscular Dystrophy (FSHD) or Related Diseases provides us with information about your medical and social histories. Patient Information Form for Unaffected.
- The Authorization for Release of Medical Information gives us your permission to contact your physicians to request medical records. Please provide as much detail as possible to make it easier for our staff to contact your doctors. If you have more than two physicians who may be able to provide information, feel free to complete as many forms as necessary. Authorization for Release of Medical Information
- Optional: If you would like to communicate with us via email, you must sign an additional consent form, the Patient Email Consent form. This form is optional, but must be completed if you want to use email to communicate with National Registry staff. Please print two copies of the email consent form-return one signed copy to us. The second copy is for your records.
- Lastly, let us pay your postage! Click here to download a mailing barcode that will let you return this packet to us free of charge. Just print it out and tape it to the front of your envelope.
For best results, place the forms in a 9 inch by 12 inch envelope and return it to the National Registry. Thank you for your interest!
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Last Reviewed and Updated 10/08/2009
