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.

The Carter Center for Brain Research in Holoprosencephaly and Related Brain Malformations at the Kennedy Krieger Institute (KKI) is part of a national multicenter collaboration providing clinical care for children with holoprosencephaly, education/family support, and research on this rare disorder. The Kennedy Krieger Institute is a comprehensive resource for children with neurodevelopmental disabilities. KKI is an affiliated institution of the Johns Hopkins University School of Medicine and The Johns Hopkins Hospital. The Carter Center for Holoprosencephaly (HPE) is the flagship of our Brain Malformations Center and is supported by a grant from the Don and Linda Carter Foundation.

CLINICAL SERVICES
Specialists in Pediatrics, Pediatric Neurology and Genetics evaluate every child with HPE seen at KKI. Due to the highly variable presentation of HPE, an individualized plan of care is designed for each child in collaboration with the family and/or child caregivers. The expertise at the Kennedy Krieger Children’s Hospital is available to children seen through the Carter Center, and, when appropriate, consultations regarding mobility, communication, feeding and nutrition will be obtained.

To schedule an appointment or inquire about clinical services for children with holoprosencephaly or a related brain malformation, contact the Center Director Elaine Stashinko, RN, PhD at:
Phone: 443-923-9146 | Fax: 443-923-9145 | Email: hpe@kennedykrieger.org

EDUCATION/FAMILY SUPPORT
We are dedicated to supporting families in caring for children with holoprosencephaly. The Carter Center at KKI is also one of several Carter Centers nationally and as part of this network we are participating in several initiatives which are focused on linking together patients, families and professionals with an interest in HPE. We are trying to establish an American HPE Support Group. Such a group would be an organized forum for families with children with HPE to support each other. There is a National Carter Center HPE web site that has information about holoprosencephaly, answers to frequently asked questions, family pages, a forum for family-physician exchange, the latest news on HPE and related links.

RESEARCH SERVICES
A priority of the Carter Centers is the development of a comprehensive research program focused on (1) constructing a clearer definition of HPE diagnosis and progression and (2) defining interventions that improve the symptoms and quality of life for children with HPE and their families.

In addition to clinical services, the KKI Carter Center offers affected children and families the opportunity to participate in the latest research on holoprosencephaly and related brain malformations. We are currently directing a neuroimaging initiative using our state-of-the-art MRI facility at KKI. This initiative should lead to a more detailed description of the structural features of the brain malformation in HPE. The study will also enhance our understanding of the relationship between brain structure and function. This information is essential for developing effective management and treatment strategies for children with holoprosencephaly and related brain malformations.

Other Carter Center research interests that parents and their children may be invited to participate includes an international HPE registry and database, genetic causes of HPE, an EEG study and a neurocognitive study.

For more information, contact the KKI Carter Center at:
Phone: 443-923-9132 | Email: hpe@kennedykrieger.org

FAMILY SUPPORT
The KKI Carter Center is one of several Carter Centers established throughout the US by the Don and Linda Carter Foundation. As part of this network, we are participating in several initiatives which are focused on linking patients, families and professionals with an interest in HPE. If you would like to participate in the international registry or database, please contact Nancy Clegg, RN, CNS, PhD, CCRP at nancy.clegg@tsrh.org.

OUR TEAM

Elaine Stashinko, RN, PhD
Center Director

Elaine Stashinko is the most recent member of the Carter Center team at the Kennedy Krieger Institute. She received her doctorate from the University of Pennsylvania School of Nursing with a focus on child health and research. For the last 12 years, she has been employed in joint positions at the Johns Hopkins University School of Nursing, School of Hygiene and Public Health, and the Johns Hopkins Children's Center in pediatric research and faculty roles. The scope of her teaching has ranged from undergraduate pediatric clinical instruction to courses on theory and research at the PhD level. She has clinical experience in pediatric nursing in both acute care and primary care settings. Elaine has written articles and contributed to national clinical practice guideline development related to family-centered care. She is particularly interested in collaborating with the Carter Center team to implement this family-centered care philosophy within the Center's case management framework to empower families and children to achieve their highest potential and quality of life.