 Participation
Consent
Forms
If you have not yet entered the FXS Research Registry
go to Step
1: Enter Registry
Once you have entered the Fragile-X Research Registry, you need
to provide your consent so that we may keep your information in
the registry. The following forms are required:
For adults: Release Form, HIPAA Form, Consent Form for
Adults
For minors: Release Form, HIPAA Form, Consent Form for
Minors
If we do not receive signed consent forms, we will send them to
you.
Release Form
Please fill out a separate Release Form for each Participant you
enroll.
The Release Form allows your physician to release official test
results and diagnoses to us.
Download PDF (54K)
HIPAA Form
Also, please fill out a separate HIPAA Form for each Participant
you enroll.
The HIPAA Form authorizes us to keep your Protected Health Information
(PHI).
Download PDF (541K)
Consent Form for Minors
Please fill out a separate Consent Form for each child you enroll
in the Registry.
The Consent Form allows participant(s) to be entered into our registry.
We will notify you directly about any possible research opportunities.
If you are interested in participating, you may contact the Investigator
for more information.
Download PDF (934K)
Consent Form for Adults
If you are enrolling yourself, please fill out an Adult Consent
Form.
The Consent Form allows you as an adult to be entered into our registry.
We will notify you directly about any possible research opportunities.
If you are interested in participating, you may contact the Investigator
yourself for more information.
Download PDF (906K)
| PDF Files
These enrollment forms appear in Adobe's Portable Document
Format (PDF). PDF files can be viewed on a wide variety of
platforms with Adobe's free Acrobat Reader. Click on the Get
Acrobat Reader link for download and installation instructions. |
 |
|
