What Are the Carter Centers?
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 (HPE): The Texas Scottish Rite Hospital for Children in Dallas, Texas; Kennedy Krieger Institute in Baltimore, Maryland; Stanford
University at Stanford, California; Rutgers, the State University of New Jersey in Newark, New Jersey; and the
NIH Bethesda, Maryland.
Research Associates are also located at the Massachusetts General Hospital,
University of California San Francisco, University of Michigan, The Hospital for
Sick Children in Toronto, Canada, and the Children's Hospital and Regional
Medical Center (University of Washington School of Medicine, Seattle)
The Carter Centers receive special funding through the Carter Chancellor Urschel Neurobiology Research Fund, the Don and Linda Carter Foundation, and the Crowley-Carter Foundation.
The goal of the Carter Centers is to evaluate and treat as many patients afflicted with HPE and their families as possible in order to improve lives and conquer this disorder. The Carter Centers plan to attain this goal by supporting research and educational efforts and encouraging collaboration among investigators in the fields of neurology, genetics, and related disciplines.
The Carter Centers were created to gather, store, organize, analyze, and share information about holoprosencephaly. The Centers are committed to:
1. Creating an International HPE Registry. The centers aim to create a comprehensive list of patients afflicted with HPE. Currently, an HPE registry does not exist and there is no way of knowing exactly how many cases of HPE exist in a particular state, the United States, or worldwide. The International HPE Registry will provide research scientists with a more accurate understanding of the number of cases currently diagnosed. The Registry will also serve as a vehicle to collect clinical information to share with other researchers, to provide a means for families to contact other families, and to allow families to receive information regarding potential research initiatives in which they may want to participate.
2. Designing and implementing an ongoing database of children diagnosed with HPE. The database will be a clearinghouse for information to assist scientists in investigating the etiology, incidence, signs and symptoms, and current treatments. The data will be available to investigators to test new ideas and treatments that might prove very helpful in the future for patients and their families.
3. Supporting and conducting research to advance knowledge of HPE. Currently, the Carter Chancellor Urschel Neurobiology Research Fund, the Don and Linda Carter Foundation, and the Crowley-Carter Foundation are providing financial support to researchers at the sponsored Centers of Excellence to help explore the current data on HPE and make the Centers' goals a reality. It is hoped that these funds will help stimulate and revolutionize many areas of neuroscience, speech/language/cognitive evaluation and treatment, neurogenetics, and neurodevelopment research. Funding of future research will be generated from additional resources.
4. Developing and maintaining an Internet site for professionals and parents
to provide basic information, current scientific discoveries, current treatment options, online discussion groups, available resources, current statistics, information for clinicians and researchers, advances in diagnostic procedures, and sources of support for families. In particular, the site will provide parent education and direction so that parents can gain more hope, guidance, and insight into working with their children.
5. Creating a worldwide network of scientists, health care professionals, and families dedicated to the advancement of HPE research, education, and practice. The centers will be committed to enhancing collaboration and communication among sponsored centers and families caring for children diagnosed with HPE.
6. 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.
7. Conducting specialized clinics for children diagnosed with HPE to gather data,
perform clinical research, and evaluate outcomes.
8. Disseminating information to professionals and families via conferences, workshops, newsletters, and publications. The Carter Centers will 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 those individuals and groups dealing with the complexities of the diagnosis and management of HPE. The Centers are dedicated to the delivery of high quality and compassionate care.
Texas Scottish Rite Hospital for Children
Lucile Packard Children's Hospital at Stanford
Kennedy Krieger Institute
Rutgers, State University of New Jersey
National Human Genome Research Institute
Contact Information
Department of Neurology
2222 Welborn Street
Dallas,TX 75219-3993
Mauricio Delgado, M.D., Medical Co-director
Nancy Clegg, R.N., Ph.D., National Project Director
Debbie Baldwin, Research Assistant
214-559-8411
214-559-8383 (fax)
hpe@tsrh.org
Division of Pediatric Neurology
300 Pasteur Drive, Room A-343
Stanford, CA 94305-5235
Jin Hahn, MD, Medical Director
Susan Carter, Research Coordinator
650-498-2692
650-725-7459 (fax)
hpe@stanford.edu
Department of Neurology
707 North Broadway
Baltimore, MD 21205-1890
Alec Hoon, MD, MPH, Medical Director
Elaine Stashinko, RN, Ph.D. Center Director
443-923-9146
443-923-9132 (KKI Carter Center)
443-923-9145 (Fax)
hpe@kennedykrieger.org
Center for Molecular and Behavioral Neuroscience
197 University Avenue
Newark, NJ 07102
April Benasich, PhD, CoDirector
Paula Tallal, PhD, CoDirector
973-352-1080
973-353-1760 (fax)
hpe@axon.rutgers.edu
National Institutes of Health
Maximilian Muenke, M.D. Medical Director
10 Center Drive, MSC 1852
Building 10, Room 10C103
Bethesda, MD 20892-1852
301-435-6685 (office)
301-435-2440 (fax)
