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.
Data Collection and Evaluation Workgroup Information
NERGN
Kimberly Phillips, PhD
Karen Volle
NYMAC
Alissa Terry MS, CGC
Melissa Raspa, PhD
Beth Vogel, MS, CGC
SERN
Gaurav Dave, PhD
Rani Singh, PhD
Theresa Pringle
Aileen Kenneson-Adams
Midwest
Julie Moore, PhD
Kailtin Justice
Heartland
Barb Jackson, PhD
Ann Chou, PhD, MPH, MA
MSRGN
Liza Creel, PhD, MPH(Co-Chair)
Kathryn Hassell, MD
Janet Thomas, MD
WSRGN
Marilyn Hartzell, MEd
Sylvia Mann, MS, CGC
National Genetics Education and Family Support Center
Natasha Bonhomme
HRSA
Soohyun Kim, MPH, CPH
NCC
Alisha Keehn, MPA
Yvonne Kellar-Guenther, PhD
Annie Li
Megan Lyon, MPH
Deborah Maiese, MPA (Co-Chair)
Sarah McKasson, MPH
Joshua Miller
Maximilian Muenke, MD
Marci Sontag, PhD
*Updated 9/2020