Join the Registry

Application Forms for Registry Membership
for Children with Facioscapulohumeral
Muscular Dystrophy (FSHD)

This packet was designed for children (under age 18) with FSHD. A complete packet contains six to seven (6-7) items, depending on the age of your child. 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. Child Cover Letter
• The Permission Form describes the Registry and gives us your permission to enroll your child. Please print two copies of the Permission Form – one to sign and return to us and one to keep for your files. Affected Child Permission Form.
• In addition to the Permission Form, The Assent Form should be signed by your child if he/she is between the ages of 12 and 17 and is able to understand the procedures involved with the Registry. If needed, please print two copies of the Assent Form– one to sign and return to us and one to keep for your files. Child Assent Form.
• The Patient Information Form for Individuals with FSHD provides us with information about your child’s medical and social histories. Patient Information Form FSHD.
• The Authorization for Release of Medical Information gives us your permission to contact your physicians to request medical records about your child’s muscle disease. 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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Updated 9/12/2006