welcome

The Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations want to help educate  families  about the disorder, enhance their knowledge of HPE and how to manage their child's health, and assist families with coping with the overwhelming demands that often accompany providing care for a child with special needs. 

 

The Carter Centers for Brain Research in Holoprosencephaly provide a variety of services to families (education, radiology evaluations, DNA testing, international registries, parent-to-parent networks, etc.).  Any parent may choose to be involved in just one program or be involved all programs. Many parents who do not live near the Carter Centers decide to join the registry, family network, and mailing list. They also may send copies of MRI or CT scans and/or submit clinical information for the International HPE clinical database.  We also provide information and recommendations to other physicians caring for HPE patients and provide them with information regarding blood specimens that any lab can draw and send in. 

 

Even if you have lost a child diagnosed with HPE, you may still register your child and request information. We appreciate information on every child with HPE. We are here to help all families.

About Holoprosencephaly

Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. This brain malformation can range from mild to severe and is classified into four types.

Carter Centers & Services

The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a collaborative initiative among sponsored Centers of Excellence in the field of holoprosencephaly.

Research
Articles

Holoprosencephaly research is critical to increasing our understanding of this condition. These findings are available in a number of published articles for you to learn more about HPE.

HPE Movie

The Carter Centers is pleased to announce a movie about holoprosencephaly!

“Living with Hope: Understanding Holoprosencephaly”

This captivating and heartwarming video explores the nature of holoprosencephaly (HPE), the wide range of its manifestations, its cause, treatment and probable outcomes. Moreover, it is a story about families who have a child diagnosed with HPE. It is also a tale of courage, determination and triumph. It is ultimately a story of hope.

The run-time of this film is approximately 45 minutes. You can request copies of the full video by contacting:

Debbie Baldwin, BS, CCRP
Texas Scottish Rite Hospital for Children
2222 Welborn Street, Dallas, Texas 75219-3993

Office: 214-559-7614, Fax: 214-559-8383
Email: Debbie.Baldwin@tsrh.org

Contacts

If you would like more information about holoprosencephaly, the HPE Registry or how to participate in one of our studies, please contact us at one of the locations below.

For further information about the Carter Centers or its services, please contact:

Debbie Baldwin, BS, CCRP
Research Coordinator, Department of Neurology
Texas Scottish Rite Hospital for Children
2222 Welborn Street
Dallas, Texas 75219
Phone: 214-559-7614 | Fax: 214-559-8383 | Email: Debbie.Baldwin@tsrh.org

If you have specific clinical questions or concerns or would like to be added to our mailing list, please contact:

Dr. Nancy Clegg, RN, CNS, PhD, CCRP
National Holoprosencephaly Project Director
Texas Scottish Rite Hospital for Children
2222 Welborn Street
Dallas, Texas 75219
Phone: 214-559-8411 | Fax: 214-559-8383 | Email: Nancy.Clegg@tsrh.org