Telemedicine/
Telehealth

The use of technology in a healthcare setting can allow a patient, without local access to geneticist, to engage with a genetics professional and it can allow a primary care provider to contact a genetics provider to become better equipped to provide care to an individual with a complex genetic disorder. NCC works with the seven RGNs, NGEFSC, HRSA, and national partners (such as the American Telemedicine Association) to support training of genetics and non-genetics provider in telemedicine tools and work to develop health outcome measures that demonstrate the utility of telemedicine services.

Explore our telegenetics resources and tools by:

Regional Genetics Network

Find telegenetics resources and information about trainings/consult servies in your region.

Resource Repository

Find resources from NCC ReRe (Resource Repository). Access resources housed in the NCC ReRe.

Can’t find what you are looking for or what you need? Please contact ncc@nccrcg.org

Resource Repository

Listed below is a filtered view of NCC ReRe (full repository here). The below view contains all of the resources the RGNs, NCC, and NGEFSC have developed related to telegenetics. Additionally, it includes valuable resources from the HRSA-funded Telehealth Resource Centers (TRCs).

The repository can filter by type of resource, who it was developed by, or the date the resource was created. Additionally, if you are looking for a specific resource, you can search on the right hand side of the screen.

Select an RGN to explore their telegenetics resources and learn about their telegenetics training program.

NERGN

The New England Regional Genetics Network in collaboration
with the Western States Regional Genetics Network has developed and implemented an introductory telegenetics training program for genetic counselors and genetic counseling students.
The program includes:
1. Ten self-paced on-line modules (~15 minutes each)
2. Two live webinars (1 hour and 1.5 hours)
3. A MANDATORY one day in-person, hands-on training

Learn more.

NYMAC

NYMAC sponsors a combined virtual and in-person telegenetics training program. Online training modules include topics such as policy/legal issues, technology, etiquette, and billing. The one-day in-person session includes hands-on technology training, instruction, and role playing. Email for more information.

SERN

Please contact SERN to learn more about their telegenetics training program.

MGN

The Midwest Genetics Network (MGN) collaborates with Heartland Regional Genetics Network and the Upper Midwest Telehealth Resource Center to offer telegenetics training opportunities for genetic counselors and additional providers. The trainings include an online module and a one-day in-person training that covers etiquette, policy, equipment, and the chance to practice troubleshooting telemedicine appointments. MGN also collaborates with Heartland to offer a training designed for geneticists with similar content and the opportunity for clinic observation and a NICU consult observation. For more information on future trainings, please contact MGN at info@midwestgenetics.org.

Heartland

Please contact Heartland to learn more about their telegenetics training program.

MSRGN

Please contact MSRGN to learn more about their telegenetics training program.

WSRGN

Goal: Increase the number of genetic service providers that use telegenetics.

This inter-regional project seeks to train genetic specialists to use telegenetics in their practice.  The training consists of self-paced on-line modules, webinars, and an one day in-person session.  CMEs and CEUs are offered for the training.  The training is done in partnership with the HRSA funded Southwest Telehealth Resource Center at the University of Arizona.  Training sessions are held about once per quarter.

Learn more.

Family Center

Telegenetics Infographic for Patients

Telegenetics Workgroup Information

NERGN

Peter Antal, PhD
Leah Burke, MD
Rosemarie Smith, MD

NYMAC

Katharine Bisordi, MS, MGC
Kathy Chou, PhD
Carol Greene, MD
Alissa Terry, MS, CGC
Beth Vogel, MS, CGC

SERN

Hans Andersson, MD
Elizabeth Krupinski, PhD
Theresa Pringle, MPH
Ami Rosen

Midwest

Kaitlin Justice, MPH
Jane Pilditch, MPA

Heartland

Shobana Kubendran, MBBS, MS, CGC
G. Bradley Schaefer, MD
Lori Williamson Dean, MS, CGC, LGC

MSRGN

Dale Alverson, MD
Kathryn Hassell, MD
Annette Lara, MBA
Janet Thomas, MD

WSRGN

Lila Aiyar, MS, CGC
Sylvia Mann, MS, CGC (Chair)
Michelle Takemoto, MS, CGC

National Genetics Education and Family Suppoort Center

Alisa Bentley
Ashley Crowley
Joel Lopez

HRSA

Soohyun Kim, MPH, CPH
Debi Sarkar, MPH
Joan Scott, MS, CGC

Telehealth Resource Center

Danielle Louder
Lloyd Sirmons
Katharine Wibberly, PhD

NCC

David Flannery, MD
Alisha Keehn, MPA
Megan Lyon, MPH
Deborah Maiese, MPA
Maximilian Muenke, MD

*Updated 12/2019

Impediments and Solutions to Telegenetics Practice: Meeting Report


Abstract

Medical genetics is a prime example of a specialty to which many patients have insufficient access. Telemedicine has the potential to deliver health care to individuals and families in medically underserved areas to connect patients and providers across geographic distances. On November 5th and 6th, 2009, a working group, convened by the American College of Medical Genetics & Genomics (ACMG) and the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives (NCC), met to discuss the challenges facing wider adoption of telemedicine for the provision of clinical genetics services. Broadly called telegenetics, this evolving mode of medical service delivery can be used for the assessment, diagnosis, management, treatment, education, and counseling of patients and families dealing with a wide array of genetics issues. This paper summarizes the working group meeting and the resulting recommendations including adoption of multistate licensing, national credentialing, appropriate financing and reimbursement, and continued investment in technological development to increase usability and national infrastructure.

Authorship

Nirav N. Shah, MD, JD1, Lynn D. Fleisher, PhD, JD1, Hans H. Andersson, MD2, Becky B. Butler, MSSW, LCSW3, Barry H. Thompson, MD4, Judith Benkendorf , MS, CGC4, Alisha Keehn, MPA4, David Flannery MD5, Dale C. Alverson, MD6, Sylvia Au MS,CGC7, Lisa Robin8, James Puente8, Joey Ridenour, RN, MN9, and Michael S. Watson, MS, PhD4
1Sidley Austin, LLP, Chicago, Illinois; 2Tulane University School of Medicine, New Orleans, Louisiana; 3University of Arkansas for Medical Sciences, Little Rock, Arkansas; 4American College of Medical Genetics, Bethesda, Maryland; 5Medical College of Georgia, Augusta, Georgia; 6University of New Mexico School of Medicine, Albuquerque, New Mexico; 7Hawai’i Department of Health, Honolulu, Hawai’i; 8Federation of State Medical Boards, Washington, DC; 9 Nurse Licensure Compact Administrators, Chicago, IL