Statewide Registry Enrollment
Informed Consent Form
You and your child are invited to enroll in a Statewide Registry for Rett Syndrome. This registry is called the “Alabama Rett Syndrome Family Registry.” The registry is being developed by Alabama Rett Connect and the Southeastern Rett Syndrome Alliance, and is funded by a grant from the Alabama Council for Developmental Disabilities. If you need help completing this form, please contact Dana Sutton, Program Director at 256-403-1103 or Sheryl Hand, Secretary at 334-201-6718. You may also contact us through e-mail at dana@alabamarettconnect.org or sheryl@alabamarettconnect.org
WHAT IS THE REGISTRY FOR?
The purpose of the registry is to develop, build, and maintain a support network of Rett Syndrome families in each area of the state. Families will add their information to the registry and then send it to the Program Director. The Program Director and Secretary will then create a list of known Rett Syndrome families and send it to each area representative, to all Rett Syndrome families who have signed the consent forms within the state of Alabama, and to SRSA. The registry will provide a listing of families that live in or around their area thus creating a network of support. It will also serve in locating Rett Syndrome families throughout the state of Alabama, so that we may ensure that persons with Rett Syndrome are accessing and utilizing available services to receive optimal care to better their lives and those of their families. There will be a separate list for families who do not wish to be placed on the statewide registry. This list will only be visible to the representatives of SRSA and no information will be given out.
WHAT WILL YOUR PARTICIPATION IN THE REGISTRY INVOLVE?
If you decide to enroll in the registry, you will be asked to do the following things: 1) to enter the registry you will need to sign the Photo Release Agreement, Release of Information Agreement, plus complete the Questionnaire and return them to the Program Director at Alabama Rett Connect. 2) In approximately 2 months you will receive a statewide registry with known Rett Syndrome families that have agreed to participate in the program. 3) Once a year, the Program Director or Secretary of Alabama Rett Connect will contact you to update your information.
WHAT INFORMATION WILL BE KEPT IN THE REGISTRY?
The following information from the Questionnaire/Photo Release Agreement and Release of Information Agreement will be recorded in the participant registry: 1) Information about the child/adult with Rett Syndrome: name, birth date, gender, date of diagnoses if known. 2) Information about the parents/family—names, address, telephone numbers, email addresses, number and ages of other children. 3) After your information is added to the registry a list will be sent to each family, your local PHA representative, SRSA, IRSF, and the UAB Center of Excellence Rett Syndrome Clinic. This information will make it easier for other families in your area to network together for support and also to keep a more accurate registry of persons with Rett Syndrome within the state of Alabama. We encourage each family to fill out this information and check the appropriate line of participation. This will help us maintain a data base of known Rett Syndrome families, and at the same time, respect your wishes for participation.
HOW WILL YOUR CONFIDENTIALITY BE PROTECTED?
Information about your family will be kept confidential. In other words we will not give your information to anyone outside of those listed on this registry without your permission. Those that will get your information includes: other Rett Syndrome families, your local Rett representative, SRSA, ALRC, and UAB Center for Excellence, Dr. Percy.
WHOM SHOULD I CONTACT IF I HAVE QUESTIONS?
If you have any questions about the state registry, please call the Program Director of Alabama Rett Connect at 256-403-1103 or the Secretary at 334-201-6718. Or e-mails us at: dana@alabamarettconnect.org or Sheryl@alabamarettconnect.org.
WHAT ARE YOUR RIGHTS AS REGISTRY PARTICIPATES?
Taking part in this registry is voluntary-it is your free choice. Also it is your free choice to withdraw from the registry at any time (to do so, please contact the Program Director or Secretary of Alabama Rett Connect at 3506 Mary Drive Oxford, AL 36203, 256-403-1103, or 334-201-6718).
**If you withdraw from the registry, we will not publish your information on the following year’s state-wide registry.
Alabama Rett Connect
EMPOWERING AND CONNECTING
RETT FAMILIES IN ALABAMA
PHOTO RELEASE AGREEMENT
I, , hereby irrevocably consent to the unrestricted use of my name, photograph, picture, video, or artwork for use in publications, or purpose of trade, authorize and give full consent to ALABAMA RETT CONNECT and THE SOUTHEASTERN RETT SYNDROME ALLIANCE to copyright photographs, pictures, and Videos without limitations or reservations. Check one below:
RELEASE OF INFORMATION AGREEMENT
I, , hereby consent to the release of my name, address, e-mail address, phone number, name and age of Rett Child/Adult to Alabama Rett Connect, Dr. Alan Percy with UAB Rett Clinic, The International Rett Syndrome Association, and the Southeastern Rett Syndrome Alliance. I understand that this information will be placed on a state-wide registry to aide in communication and resource sharing between Rett families and professionals.
Check one below:
Street Address or PO Box
City
State
Zip Code
Full Name of Rett Child / Adult
Age of Rett Child / Adult
Date of Birth
Has your Rett loved one ever been diagnosed with any of the following before the diagnoses of Rett Syndrome?
(Check all that apply)
***At what age did your child start showing regression?
Parent/Family/Guardian Information
Name of Person completing this form:
Relation to Rett Child/Adult:
If you are legal guardian please check below and submit guardianship papers:
Phone Number:
Email Address:
Mailing Address:
County:
Does the Rett Child / Adult have any siblings (with or without intellectual disabilities) ? Check one below:
Siblings ages:
**** IF YOU WOULD LIKE A COPY FOR YOUR RECORDS ,PLEASE PRINT BEFORE CLICKING SUBMIT BUTTON BELOW:
