Data Collection and Evaluation

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
Molly Martzke

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 10/2020