How to Refer a Child with
Holoprosencephaly
or Participate in Our Programs
For More Information about HPE
For more information about HPE or to be added to our 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.
How to Enroll in the International HPE Registry
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.
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.
To Participate in the Neuroimaging Study in Holoprosencephaly
To participate in the neuroimaging research or to send a child's CT/
MRI scans please sign the CONSENT FORM and mail all films and correspondence to:
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
The family or referring doctor should include a note indicating that the films
are being referred by the Carter Centers for Dr. Barne's review.
For any other questions
Please contact the National Project Director at
214-559-8411
214-559-8383
(fax)
