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

Peter Antal, PhD
Karen Voelle

NYMAC

Melissa Raspa, PhD
Beth Vogel, MS, CGC
Amanda Wylie, MPH

SERN

Gaurav Dave, PhD
Yetsa Osara, MPH
Rani Singh, PhD

Midwest

Julie Moore

Heartland

Barb Jackson, PhD (Co-Chair)
Lori Williamson Dean, MS, CGC, LGC

MSRGN

Liza Creel, PhD, MPH
Kathryn Hassell, MD
Annette Lara, MBA
Janet Thomas, MD

WSRGN

Sylvia Mann, MS, CGC

National Genetics Education and Family Support Center

James O’Leary, MBA

HRSA

Jesse Licenstein, PhD
Debi Sarkar, MPH
Joan Scott, MS, CGC
Jill Shuger, ScM

NCC

Alisha Keehn, MPA
Megan Lyon, MPH
Deborah Maiese, MPA (Co-Chair)
Joshua Miller, MPH
Sanjyot Sangodkar, MEM
Michael Watson, PhD, MS

*Updated 07/2018