Data Collection and Evalution

Shared definitions and uniform data collection methods are essential to the evaluation of changes to access to services for patients with genetic conditions, especially the medically underserved. The NCC, in collaboration with the seven RGNs, NGEFSC, and HRSA, to develop measures that demonstrate the impact the RGN/NCC/NGEFSC and develop and share data reports that demonstrate findings.

With the assistance of the NCC Data Collection and Evaluation Workgroup, the NCC is developing an implementation process for the five HRSA performance measures. Each RGN is required to submit data on genetics education/training, facilitating connections between patients and geneticist, and telehealth/telemedicine usage to deliver genetic services. A yearly report will be submitted to HRSA outlining the RGNs progress.