The team approach to the management of ectodermal dysplasias

1. The medical and dental needs of ED patients require multidisciplinary treatment. Because of the difficulty in identifying centers with genetic and dental services, locating the availability of these services should be undertaken first. 2. A team member for the specialties of genetics, pediatrics, dermatology, opthalmology, otolaryngology, orthodontics, prosthetics, and pediatric/general dentistry must be identified at each center. 3. An individual to act as liaison with other groups must be identified. 4. A team leader must be named; this individual may be the same or different from the specialists, and local teams must be established. 5. A protocol for communication among national and regional centers, identified specialists, and local teams must be established. 6. Each center should attempt to identify specialists in the region interested in participation. 7. Demographics of identified families need to be established. 8. As patient populations are found, the need for new centers can be identified. 9. As groups of the necessary specialists are identified in a need area, the establishment of new centers can begin. 10. A protocol for uniform record keeping and the centralization of the record base should be established. 11. Treatment protocols should be established to allow coordination of treatment and to support the research aspects of the centers. 12. Efforts need to be directed at establishing financial support for treatment not covered by third-party carriers. 13. Lobbying efforts need to be planned to seek changes in existing laws to provide for adjunctive dental care coverage under medical insurance policies. 14. Efforts need to be initiated to seek private and public funding for the centers. Grant preparation needs to be undertaken to seek support for research activities. 15. A protocol for the recording of ectodermal dysplasia information through a central registry, as is done through the Centers for Disease Control (CDC) with other recognized birth defects, is called for.