THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY
AND RELATED MALFORMATIONS

The Carter Centers have established the International HPE Registry as a way to create a comprehensive list of patients diagnosed with holoprosencephaly not only in the United States but also worldwide. Holoprosencephaly (HPE) is a medical condition that is not well understood. The International HPE Registry provides research scientists with a more accurate understanding of the number of HPE cases diagnosed and serves as a vehicle to collect clinical information to share with other researchers. It also provides a means for families to contact other families and allows families to receive information regarding potential research initiatives in which they may want to participate.

Even if you have lost a child diagnosed with HPE, you may still register your child. Please complete the form according to what your child was able to accomplish and his/her limitations. We appreciate information on every child with HPE.

International HPE Registry

  1. Consents
  2. Patient Information
  3. Parent/Guardian Information
  4. Diagnosis and Tests
  5. Medical Problems
  6. Development
  7. Family History
  8. Review

Consents

By registering my child in The Carter Centers’ International HPE Registry, I give my permission to have my family’s name and address and my child’s clinical information included in the registry. Your permission to add your child’s health information to the registry is greatly appreciated, but it is completely voluntary. If you choose not to allow us to add your child’s health information to the registry, this will not affect your care at any of The Carter Centers.
I further give my permission to: (check all that apply)
* I understand this may bring direct requests to me from researchers for participation of my family in other research projects.
** I understand my child’s name and personal information will be removed from anything that is shared with others.
I give my permission for the following information to be shared with other researchers: (Please choose only one)
*
*
No matter what options you choose, you reserve the right to contact researchers independently and directly. You may also cancel or revise this release at any time by submitting a written notice to:
THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY AND RELATED MALFORMATIONS
Texas Scottish Rite Hospital for Children • 2222 Welborn Street, Dallas, TX 75219
Phone: 214 559-8411 | Fax: 214-559-8383 | E-mail: hpe@tsrh.org