Rivne and Volyn Oblasts insisted that our project be expanded from BD Surveillance to include the registry of all neonates. We agreed and plans and procedures were expanded accordingly. This effort will generate the first data of its kind - provide denominator data regarding all birth and numerator data regarding BD. (Data Flow Schema)
Telefax machines, PC systems and digital cameras were deployed, including rural raions. Medical histories illustrated by digital images are exchanged electronically thus linking rural raions, regional centers, core Ukrainian centers with other centers in the world.
An agreement with the Mohyla Academy University in Kyiv provides, at minimal cost, a large office adjacent to academic units training social workers, ecologists and computer technologists. Also adjoining is an Internet training center used by the U.S. sponsored IREX program. The Mohyla University also provides, at minimal and in some cases no cost, access to conference rooms, library and other resources. Meetings were held in these facilities and partners have participated in IREX programs.
The UA has the aim to be an umbrella support organization for parental support groups concerned with BD. Our program provided resources, its office and its "in country" program coordinator, Dr. I. Kharitonova, to help parents and professionals to organize the UA. The Directors and board members of the UA reflect the philosophy that a shared vision by neonatologists, pediatricians, medical geneticists is essential for BD comprehensive care and prevention and has to be shared with parents, interested public and decision makers.
The Program provided resources to the UA to sponsor the first national gathering of parents of PKU children. Among various initiatives, the parents chose as an immediate objective, to register PKU regional support groups as a step toward the creation of a National PKU Support Organization. The UA has assembled a PKU database listing a growing number of PKU children (nearly 600). A web PKU Ukrainian site is planned.
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