Recommended
Recommended
More Related Content
Similar to How to join the FD/MAS Patient Registry
Similar to How to join the FD/MAS Patient Registry (17)
Recently uploaded
Recently uploaded (20)
How to join the FD/MAS Patient Registry
- 1. FD/MAS Patient Registry: It’s As Easy as 1 2 3
- 2. Step 1: Register Register using the information of the person entering the data: If you are the patient, this is your name and contact preferences. If you are the guardian of the FD/MAS patient, this is still your name and contact preferences. You add your child’s information in a later step.
- 3. Step 2: Add Participants Choose “Get Started” on the Home Page to Manage Participants. Adult patients can select “Add yourself as a participant” Legal guardians of children with FD/MAS can select “Add Another Participant” to add their child’s information
- 4. Step 3:Informed Consent Choose “Grant Consent” from the Manage Participants page Carefully read the explanation of the study Confirm that you understand and agree Help can be provided if you have questions! Email registry@fibrousdysplasia.org
- 5. What’s Next? You can now take surveys! Answer each survey and submit each one when finished Check out the “Completed” tab after you’re done, to see graphs of the data that’s been entered into the registry so far.