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.

About 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 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 learn as much as possible about patients afflicted with HPE and their families 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:

  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.