TY - JOUR
T1 - Regional models of genetic services in the United States
AU - the National Coordinating Center for the Regional Genetic Service Collaboratives Regional Support Service Model Workgroup and Advisory Committee
AU - Kaye, Celia
AU - Bodurtha, Joann
AU - Edick, Mathew
AU - Ginsburg, Susanna
AU - Keehn, Alisha
AU - Lloyd-Puryear, Michele
AU - Doyle, Debra Lochner
AU - Lyon, Megan
AU - Ostrander, Robert
AU - Taylor, Matthew
N1 - Funding Information:
This project was supported by the HRSA of the US Department of Health and Human Services (HHS) under Cooperative Agreement U22MC24100, NCC for the Regional Genetic Service Collaboratives, $1,599,999 (6/15–5/17) awarded to the American College of Medical Genetics and Genomics.
Publisher Copyright:
© 2019, American College of Medical Genetics and Genomics.
PY - 2020/2/1
Y1 - 2020/2/1
N2 - Purpose: To outline structures for regional genetic services support centersthat improve access to clinical genetic services. Methods: A workgroup (WG) and advisory committee (AC) (1) conducted acomprehensive review of existing models for delivering health care through aregional infrastructure, especially for genetic conditions; (2) analyzed datafrom a needs assessment conducted by the National Coordinating Center (NCC) todetermine important components of a regional genetic services support center;and (3) prioritized components of a regional genetic services supportsystem. Results: Analysis of identified priorities and existing regional systems ledto development of eight models for regional genetic services support centers. Ahybrid model was recommended that included an active role for patients andfamilies, national data development and collection, promotion of efficient andquality genetic clinical practices, healthcare professional support fornongeneticists, and technical assistance to healthcare professionals. Conclusion: Given the challenges in improving access to genetic services,especially for underserved populations, regional models for genetic servicessupport centers offer an opportunity to improve access to genetic services tolocal populations. Although a regional model can facilitate access, somesystemic issues exist—e.g., distribution of a workforce trained in genetics—thatregional genetic services support centers cannot resolve.
AB - Purpose: To outline structures for regional genetic services support centersthat improve access to clinical genetic services. Methods: A workgroup (WG) and advisory committee (AC) (1) conducted acomprehensive review of existing models for delivering health care through aregional infrastructure, especially for genetic conditions; (2) analyzed datafrom a needs assessment conducted by the National Coordinating Center (NCC) todetermine important components of a regional genetic services support center;and (3) prioritized components of a regional genetic services supportsystem. Results: Analysis of identified priorities and existing regional systems ledto development of eight models for regional genetic services support centers. Ahybrid model was recommended that included an active role for patients andfamilies, national data development and collection, promotion of efficient andquality genetic clinical practices, healthcare professional support fornongeneticists, and technical assistance to healthcare professionals. Conclusion: Given the challenges in improving access to genetic services,especially for underserved populations, regional models for genetic servicessupport centers offer an opportunity to improve access to genetic services tolocal populations. Although a regional model can facilitate access, somesystemic issues exist—e.g., distribution of a workforce trained in genetics—thatregional genetic services support centers cannot resolve.
KW - Public health
KW - access to service
KW - genetic services
KW - regional models
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U2 - 10.1038/s41436-019-0648-1
DO - 10.1038/s41436-019-0648-1
M3 - Article
C2 - 31488898
AN - SCOPUS:85071952886
SN - 1098-3600
VL - 22
SP - 381
EP - 388
JO - Genetics in Medicine
JF - Genetics in Medicine
IS - 2
ER -