Data collection in the Great Plains Genetics Service Network: using limited funds to collect data from centers with...

The Data Committee of the Great Plains Genetics Service Network (GPGSN) coordinates the collection of data relating to delivery of genetic services in eight states. These states are Iowa, Missouri, Arkansas, Oklahoma, Kansas, Nebraska, South Dakota and North Dakota. The funds allocated to this project by the GPGSN are limited. The distance between genetics service sites is great and the population density in the regions being served is low. The local resources available to the genetics services sites participating in data collection vary from robust to "bare-bones". The approach to solving the problem involved the following. First the committee the data items to be collected were identified and defined. Second, a standard format for transmitting the data to the GPGSN regional coordinating center in Iowa City was developed. Third, the services sites and their resources for collecting data were identified. Fourth, resources were allocated to different sites in a manner that seemed most able to help that center to contribute data to the regional center. Fifth, data were aggregated at the regional center and aggregated data reports were returned to collecting sites. Finally, items were modified in response to the feedback received from the genetics services sites. Although the philosophy is that data collection should be a by-product of providing quality genetic services, the region recognizes that service sites will need help to conform with regional standards. Therefore the region encourages each service site to develop its own method to collect data, and provides assistance to it in getting the data into the regional transmission format.(ABSTRACT TRUNCATED AT 250 WORDS)