Carter Centers and 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.

Carter Center Services

International HPE Registry

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 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 allow families to receive information regarding potential research initiatives in which they may want to participate.
There are three ways to register:

  1. Register Online
  2. Download English | Español
  3. Contact Debbie Baldwin, BS, CCRP
    Phone: 214-559-7614 | Fax: 214-559-8383 | Email: Debbie.Baldwin@tsrh.org

Neuroimaging (Evaluation of MRI or CT Scan)

If you would like your child's MRI evaluated by one of the Carter Center's radiologists at no charge to you, we will mail you the consent forms necessary to obtain a copy of your child's scans. It usually takes 6 to 10 weeks to obtain the scans, have them evaluated and send you a written report.  We provide a letter verifying the type of HPE your child has, and a description of the problems and abilities of other children with HPE with similar scans (For example, “Your child's scans show severe hypothalamic fusion.  Other children with this same finding have problems with temperature regulation and diabetes insipidus.  Your child is at risk for developing these problems and will need to be monitored...").

To request the forms allowing us to obtain a copy of your child’s MRI or CT scan, you may contact Debbie Baldwin or request a copy of the scan yourself and mail to:

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

Note: International patients must obtain a copy of the scans on CD and mail to Debbie Baldwin at the address above.

You are not obligated to participate in research.  You will receive the same services and support either way.  Some parents want to share information and scans so that other children may benefit.  Other parents are interested in individual information but do not want their child's information shared with others.  We support your decision either way.

Genetic Testing

Genetic testing can be very confusing.  Genetic testing looks at chromosomes as well as genes. Each person has 23 chromosomes from their father and 23 chromosomes from their mother.  There are thousands of genes on each chromosome.  Many labs can look at chromosomes. By doig so, the cause of some genetic disorders can be found.   Only a few labs can specifically look at HPE genes.  We recommend contacting the National Institutes of Health (NIH) for more information about gene testing.  This is a free service.  For more information, please contact:

Paul Kruszka, MD
NHGRI, NIH
Bldg. 35, Room 1B 207
35 Convent Drive MSC 3717
Bethesda, MD
Phone: 301-402-9654 | Fax: 301-496-7184 | Email: Paul.Kruszka@nih.gov

Patient Evaluations

To schedule an evaluation for your child with one of the Carter Centers, please contact the center directly:

Texas Scottish Rite Hospital for Children
Nancy Clegg
Phone: 214-559-8411
Email: Nancy.Clegg@tsrh.org
Kennedy Krieger Institute
Baltimore, MD
hpe@kennedykrieger.org

Elaine Stashinko
Phone: 443-923-9146
Email: stashinko@kennedykrieger.org