LEND Genetics Meeting

May 4, 2007

LEND GENETICS PLANNING MEETING
December 13, 2006
Phoenix Park Hotel, 520 N. Capitol Street, NW, Washington, DC
Facilitator: Ann Cox

Materials

Meeting Report

• Report with appendices [ 2.2mb]
  
• Report narrative only [ 151kb]
  
• Report appendices only [ 2mb]

Download the Meeting Agenda
Download the Particpant List
View Additional LEND Genetics Resources

 

Welcome and Introductions

Laura Kavanagh, MPP, Training Branch, MCHB
Michele Puryear, MD, Genetic Services Branch, MCHB
George Jesien, PhD, AUCD

Overview of LEND Genetics Special Projects (download progress report summary)

Herb Cohen, MD, Albert Einstein College of Medicine LEND (download presentation)
Daniel Bier, MPA, Waisman Center LEND (download presentation)
Joann Bodurtha, MD, Virginia Commonwealth University LEND (download presentation)

Additional LEND Genetic Efforts

Marion Taylor Baer, PhD, USC, Children's Hospital Los Angeles LEND (download handout)
Chris Trahms, MS, RD, U. of Washington LEND (download presentation, handout)
Brad Schaeffer, MD, University of Nebraska LEND (download handout)
Karen Edwards, MD, New York Medical College, Valhalla LEND (download handout)
Lann Thompson, EdD, MSSW, Indiana University LEND (download handout)
Roz Parrish, MSN, University of Cincinnati LEND (download handout)

New Issues, Efforts, Resources, Diversity

Judith Benkendorf, MS, CGC, American College of Medical Genetics (download presentation, presentation handout)
Penny Kyler, MA, OTR, Genetics Services Branch, MCHB

Lunch

Large group discussion

• Given the experiences shared from the morning sessions, how do we use these to make a greater impact across the LEND network?

• With whom can we partner to extend the training benefit beyond the LEND network?

Small group focused discussion (download handout)

• Thinking about our experiences within the LEND network and not knowing whether there will be continued funding how can we plan to (1) maintain and expand our work in genetics within LEND and (2) extend it within the other MCHB training programs.

Current LEND genetics activities will be listed under one of three categories:

• Activities that can be done if no additional funding is earmarked for genetics in LEND;
• Activities that can be done if a supplement of up to $50,000, in addition to current funds earmarked for genetics in LEND, is available; and
• Activities that require substantial increases or additional funding sources can be found.

Prioritize the activities in each category from most attainable to least attainable. Then determine:

• Whose priority is it? (MCHB, AUCD/network, LEND program-level)
• Who are appropriate partners?

Group reports and large group discussion

• Collectively select several priorities and develop implementation strategies;
• Identify what needs to be done, who will do it, and what resources are required; and
• Decide our next steps.

Wrap up