National Institutes of Health U.S. Department of Health and Human Services
Third NIH Conference on Holoprosencephaly (HPE):
Midline and Laterality Development
This conference is supported by the NIH Office of Rare Diseases
and the Carter Centers for Brain Research in Holoprosencephaly
and Related Malformations
Goals and Educational Objectives
The goals of the conference are to bring parents, researchers and professionals involved with the care of persons with Holoprosencephaly (HPE) together to exchange information, ideas, scientific data, and to share the family experience. A limited number of families will be chosen to undergo evaluations at the National Institutes of Health. Families will be given the opportunity to schedule evaluations at any of the three Carter Centers for Brain Research in Holoprosencephaly and Related Malformations for additional evaluations and continuing care.
The National Institutes of Health/Foundation for the Advanced Education of the Sciences (NIH/FAES) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.
Outline the recent scientific advances in the understanding of HPE by inviting basic scientists who specialize in the study of developmental genes in model organisms - such as the zebrafish, frog and mouse - that might provide new directions in the search for disease-causing genes in humans.
Summarize the studies of teratogens that are associated with HPE in animal models and their implications for causing HPE in humans.
Explore the possibility that developmental pathways that participate in the determination of midline development (such as HPE) also control the position of internal body organs (e.g. human laterality defects).
Discuss the radiological findings in HPE and determine correlations between brain anomalies and clinical severity.
Discuss the clinical database of HPE patients and assess risk factors for the disease.
Compare the experience of medical professionals in the optimum management of patients with HPE.
Provide a forum for families with a child with HPE to interact and strengthen coping skills, share experiences, and discuss effective treatment modalities among themselves and with the medical professionals who care for them.