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User Registration

  1. Hello
  2. Contact
  3. Diagnosis
  4. Medical Care
  5. Account
  6. Consent
  7. Confirmation

Welcome to the FOP Connection registry!

The FOP Connection registry is designed to collect medical (or health) and quality-of-life information about individuals living with FOP. There are two parts to the Registry: the Patient Portal, where patients can fill in surveys and share their own experiences with FOP, and the Medical Portal, where doctors can enter data about FOP patients under their care. You are in the Patient Portal.

Data may be entered into the Patient Portal by the individual living with FOP (you, the Registry participant) or by someone else (for example, a parent, relative, or other caregiver) on your behalf. In some cases, both you and someone else may complete the surveys.

Please provide the following information about you, the individual living with FOP:








HOW CAN WE REACH YOU?

Please provide the following information for an alternate contact or the person who may be assisting you with the Registry.

Alternate Contact #1





Alternate Contact #2 (Optional)





PLEASE CONFIRM YOU HAVE FOP
WHERE DO YOU RECEIVE YOUR MEDICAL CARE?

Please indicate the name of the physician in your local area who provides your regular care.












PLEASE CREATE A USER NAME AND PASSWORD

Please create the username and password for the FOP Connection Registry participant, the individual living with FOP. The 'Username' must be at least six (6) characters long. The password must contain a minimum of eight (8) characters with at least one (1) upper case, one (1) lower case, one (1) numeric, and one (1) special character.

INFORMED CONSENT FORM

for Adult Patient, Parent, or Guardian

Confirmation

Your account request has been submitted and is being reviewed by the IFOPA Registry staff. You will receive an email when your account is approved.

You must fill in all fields marked with (*).
If you need any assistance, contact us