Clinical Services

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Work Group Information

The Clinical Genetics Services Work Group is composed of collaborative members who have an interest in clinical genetics services in the Heartland. The goals of the committee are to:

  • support and improve the genetic services provided in the Heartland by increasing communication between states and pooling state resources.
  • increase visibility of current genetic services that are offered and facilitate appropriate subspecialty referrals.
  • ensure patients have adequate access to quality genetic services in the Heartland region.

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Projects

Primary Care Provider On-Line Education

The Clinical Services Work Group is currently working with the education group to provide content for Diagnosis Modules on the Utah MedHome Portal web site, which will be used for a collaborative, on-line, medical home oriented, primary care provider education project. Initial plans are to provide content for a module on Prader Willi syndrome as a trial, with additional modules in the future. A second module on MCADD has been drafted by Dr. Laurie Smith of the NBS Work Group.

Clinical Genetics Services Reference: Clinical Genetics Services Page

The first project was to increase communication among Heartland states by establishing a dynamic electronic resource reference, listing genetics clinical services available in the region. Data was collected from each state through a survey, compiled, reviewed and ultimately made available through the Heartland web site (see below). The goal of this project is to increase visibility and knowledge of available clinical genetics services in the region. Through collaboration with GeneTests, this information will also be available on their web site. Currently all states data (except Missouri (in process) and Kansas (no data yet)) have been synchronized with the GeneTests Clinic Directory.

Clinical Genetics Services Page

View the information collected about individual state's Clinical Genetics Services. Links to each state's Gene Tests Clinic directory page are also included.

Genetics Telemedicine Assessment and Manual

The second project was an assessment of telemedicine infrastructure in the region. This data has been collected through an intake form, which has been distributed to each state's identified contact . Assessing the telehealth infrastructure of the region will help determine the feasibility of sharing clinical and educational resources.  The goal of this project is to provide an evaluation of existing telemedicine infrastructure in each state, which can be used in exploring possible collaborative projects to increase access to genetics services. 

State Telemedicine Profiles:

This project has lead to a secondary project: to construct a genetics telemedicine manual or tool kit, using expertise and experience of Heartland members who have successfully used telemedicine for genetics services. The goal of the tool kit is to provide assistance and encourage development of additional genetics telemedicine services in our region.

FCC Rural Health Care Program

The FCC has initiated a pilot funding program to facilitate the creation of a nationwide broadband network dedicated to health care, connecting public and private non-profit health care providers in rural and urban locations. 69 projects across the nation have been funded. These may be good partners for increasing the use of telemedicine in genetics. See the links below for more information.

Telehealth Resources

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Minutes

All minutes are PDF files and require Adobe Reader

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Members

Click on the work group member's address to send an e-mail.

Facilitator:

Core Members:

Other Members:

Send email to entire workgroup

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Meeting Dates

Second Friday of the month, 8:30 am

Problems with call in-contact: ATT TeleConference Services at (800)526-2655

  • 12-12-08: 8:30-9:30 am Conference Call
  • 11-14-08: Cancelled
  • 10-10-08: 8:30-9:30 am Conference Call Agenda
  • 9-12-08: Heartland Annual Conference, Sioux Falls, SD
  • 8-8-08: 8:30-9:15 am Teleconference
  • 7-11-08: Cancelled
  • 6-13-08: 8:30-9:15 Teleconference Agenda (includes Clinical Services category list and transition summary from narrative)
  • 5-21-08: PWS Work Group Meeting
  • 4-11-08: 8:30-9:15 Teleconference scheduled
  • 3-24-08: meeting of PWS Authors only
  • 2-8-08: 8:30-9:15 Teleconference completed
  • 1-11-08: Cancelled
  • 12- 14-07: 8:30-9:15 teleconference
  • November 9, 2007: 8:30-9:15 teleconference
  • September 6-7, 2007: Heartland Annual Meeting in Oklahoma City
  • August 14, 2007: 10 am teleconference.
  • July 23, 2007: 10 am teleconference completed
  • May 21, 2007: 9 am teleconference
  • March 6, 2007: 9 am teleconference (Rescheduled from 2/23) completed.
  • February 23, 2007: 9 am teleconference conference cancelled due to low attendance.
  • November 16, 2006: Conference call completed.
  • September 29, 2006: Annual Collaborative Meeting, Omaha NE. Committee met in person.
  • May 11, 2006: Committee meeting conference call completed.
  • Feb. 27, 2006: Committee meeting conference call completed.
  • October 17, 2005: 1st Annual Collaborative Meeting, Kansas City. Committee met in person.

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Last updated: 11/13/08 SRW