Category:The Carter Centers
From Holoprosencephaly
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.
How to Refer a Child with Holoprosencephaly or Participate in Carter Center Programs
For more information about HPE or to be added to the Carter Center mailing list, please contact: Nancy Clegg, Texas Scottish Rite Hospital, Department of Neurology, 2222 Welborn Street, Dallas, Texas 75219-3993, 214-559-8411, 214-559-8383 (fax), e-mail Nancy Clegg at: hpe@tsrh.org or nancy.clegg@tsrh.org
For more information on current and ongoing studies involving children with Holoprosencephaly at the Kennedy Krieger Institute in Baltimore, Maryland, please contact the KKI Carter Center at hpe@kennedykrieger.org or call Heather Kammann at (443) 923-9132.
How to Obtain Evaluations for Children Diagnosed with HPE
At each facility, the Carter Centers are conducting specialized clinics for children diagnosed with HPE to gather data, implement programs to meet client and family needs, and evaluate outcomes. The centers are dedicated to the delivery of high quality evaluation. To find out more information about having your child evaluated, please contact: Nancy Clegg, RN, PhD, Texas Scottish Rite Hospital, Department of Neurology, 2222 Welborn Street, Dallas, Texas 75219-3993, 214-559-8411, 214-559-8383 (fax), e-mail Nancy Clegg at hpe@tsrh.org or nancy.clegg@tsrh.org
The expertise at the Kennedy Krieger Children’s Hospital 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. A specialized HPE clinic is held once a year in the Spring. Individualized evaluations can be arranged by appointment. If you would like more information about referring a child, or would like to speak to someone by phone, please contact the Care Management Office at: Toll-Free Referral: (888) 554-2080 Local Referral: (443) 923-9400. For inquiries about clinical services or current research, please call Dr. Stashinko (443) 923-9146 or Heather Kammann (443) 923-9132, or send an e-mail to hpe@kennedykrieger.org.
How to Participate in the International HPE Database
The centers maintain a database of children diagnosed with HPE 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. To find out more information about the Database, please contact: Nancy Clegg, RN. PhD, Texas Scottish Rite Hospital, Department of Neurology, 2222 Welborn Street, Dallas, Texas 75219-3993, 214-559-8411, 214-559-8383 (fax), e-mail: Nancy Clegg at hpe@tsrh.org or nancy.clegg@tsrh.org
How to Participate in the Neuroimaging Study in Holoprosencephaly
If you would like more information about the neuroimaging research study or how to send a child's CT/ MRI scans for evaluation, please contact:
Susan Carter HPE Research Coordinator A345 Boswell Building 300 Pasteur Drive Stanford University, California 94305-5235 Phone (650) 498-2692 Fax (650) 725-7459 smcarter@lpch.org
For any other questions
Please contact the National Project Director at 214-559-8411 or 214-559-8383 (fax) or you may visit: http://www.stanford.edu/group/hpe/referral to learn more about the services the Carter Center provides.
