Carter Center Programs & Services

The Carter Center for Brain Research in Holoprosencephaly and Related Malformations at Kennedy Krieger Institute offers a wide variety of programs and services for both patients and medical professionals. Read below for more information about current programs and services offered through the center.

Research:

A priority of the Carter Center is the development of a comprehensive research program focused on:

  1. Constructing a clearer definition of HPE diagnosis and progression.
  2. Defining interventions that improve the symptoms and quality of life for children with HPE and their families.

The Carter Center offers affected children and families the opportunity to participated in the latest research on holoprosencephaly and related brain malformations. For more information on current and ongoing studies involving children with holoprosencephaly, please contact the Carter Center at Kennedy Krieger Institute at hpe@kennedykrieger.org, or call Heather Kammann at (443) 923-9132.

Education and Family Support:

The Carter Center at Kennedy Krieger Institute is dedicated to supporting families caring for children with holoprosencephaly. As part of a network of several Carter Centers nationwide, Kennedy Krieger's Carter Center is participating in several initiatives focused on linking together patients, families and professionals with an interest in HPE. The Carter Center website has information on holoprosencephaly, answers to frequently asked questions (FAQs), family page postings, a family-physician exchange forum and the latest news on HPE. Efforts are currently underway to establish a national HPE parent organization and newsletter.

Clinical Services:

Due to the highly variable presentation of HPE, an individualized evaluation and plan of care is designed for each child in collaboration with the family and/or child caregivers. The expertise at Kennedy Krieger Institute is available to children seen through the Carter Center. When appropriate, consultations regarding mobility, communication, feeding, nutrition and behavior problems will be obtained. Clinical services are billed through insurance whenever possible.