Holoprosencephaly: the Carter Centers

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The Carter Centers for Brain Research in Holoprosencephaly (HPE) is seeking patients diagnosed with HPE. We are interested in obtaining DNA samples, MRI/CT scans, prenatal sonograms/MRIs, photographs & videotapes, and clinical information. We are providing OT, PT, dietary, developmental, and cognitive evaluations, physical examinations, chromosomal analyses, gene testing for mutations, education, and parent support at no cost to families. We also provide information for researchers and health care providers and provide free neuroradiology consultations. Additionally, we maintain a mailing list, International HPE Registry, and Web site (http://www.stanford.edu/group/hpe). For more information, to refer a family to one of our centers, or to contribute data, please do not hesitate to contact one of the sites listed below or our project director:

Nancy Clegg, RN, PhD,
National Holoprosencephaly Project Director
Texas Scottish Rite Hospital for Children
Department of Neurology
2222 Welborn Street, Dallas, Texas 75219
Phone: 214-559-8411
Fax: 214-559-7835
E-mail: hpe@tsrh.org

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The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a national organization of holoprosencephaly (HPE) researchers and clinicians. The Carter Centers were created to gather, analyze, and share information about holoprosencephaly. The centers are committed to:

Creating an International HPE Registry
Designing and implementing an ongoing database of children diagnosed with HPE
Supporting and conducting research to advance knowledge of HPE
Developing and maintaining an Internet site for professionals and parents (http://www.stanford.edu/group/hpe)
Creating a worldwide network of scientists, health care professionals, and families dedicated to the advancement of HPE research, education, and practice
Identifying patient and family needs, promoting coping and adaptation, locating available resources, linking families to sources of support, and implementing programs to ensure that needs are met
Conducting specialized clinics for children diagnosed with HPE to gather data, implement programs to meet client and family needs, and evaluate outcomes, and d
Disseminating information to professionals and families via conferences, workshops, newsletters, and publications. The Carter Centers create a vital link among research scientists, health care providers, families, and resources, to provide the quality and quantity of information necessary to improve health care services for families with children diagnosed with holoprosencephaly.

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Participating Sites:

Texas Scottish Rite Hospital for Children
Mauricio R. Delgado, MD, Medical Codirector
Nancy Clegg, RN, PhD, Center Director
2222 Welborn Street, Dallas, Texas 75219-3993
Phone: 214-559-8411 Fax: 214-559-8383
E-mail: hpe@tsrh.org

Lucile Packard Children's Health Services
at Stanford University Medical Center
Jin Hahn, MD, Medical Director
Jenny Jimison
HPE Research Coordinator
Department of Pediatric Neurology
300 Pasteur Dr. Room A345
Stanford, CA 94305-5235
phone: 650-498-2692
fax: 650 725-7459
E-mail: jjimison@stanfordmed.org or hpe@stanford.edu

Kennedy Krieger Institute
Medical Director: Alec Hoon, M.D.
Associate Director: Eric Levey, M.D.
Center Director: Elaine Stashinko RN, PhD
707 North Broadway, Baltimore, Maryland 21205-1890
Phone: 443-923-9146 Fax: 410-502-8093
E-mail: hpe@kennedykrieger.org

National Institutes of Health
Maximilian Muenke
Felicitas L. Lacbawan, MD
NHGRI, NIH
Bldg 35, Rm 1B 211
35 Convent Drive MSC 3717
Bethesda, MD 20892-3717
Phone: 301-496-3882
Pager: 301-207-0639
Fax: 301-496-7184

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Last revised 19-July-2006 by Steven Leber