Introducing the Medical Genetics Workforce and the NCC/RC System to LEND Judith Benkendorf, MS, CGC American College of Medical Genetics National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups November 13, 2007
Why Should the Medical Genetics Community Meet LEND?
The genetics workforce is too small to ensure that all who could benefit from genetically-tailored care receive it.
All LEND professionals and trainees should view themselves as part of the solution.
The National Coordinating Center (NCC)/Regional Genetics and Newborn Screening Services Collaboratives (RC) system is a natural partner.
LEND programs are a vehicle for education and dissemination of NCC/RC programs and activities.
ACMG education activities for providers include developing genetic disease-based vignettes ( www .understandingNF1.org) and other decision support tools that can be adapted by LENDs.
The Bottom Line: It’s Time for LEND and Medical Genetics to Move from Acquaintances to Partners (1)
The genetics workforce situation is critical, requiring coordinated, multi-faceted solutions.
Common Ground: The NCC/RC System addresses issues related to access to quality genetics and NBS services (viewing services as a continuum), and decreasing health disparities, at the level of individuals, families, communities and nationally.
NCC/RC program build bridges between genetics specialists, primary care (Medical Home) and public health
Genetic advances will impact the healthcare of people and families with neurodevelopmental disabilities.
NBS for developmental disabilities debate continues
The Bottom Line: It’s Time for LEND and Medical Genetics to Move from Acquaintances to Partners (2)
The RCs are a venue for LEND trainees to gain experience in public health genetics
The RCs provide a vehicle for dissemination of LEND materials and messages
The RCs can provide genetics and NBS resources to LENDs
Likewise, LENDs provide a network of professionals and trainees who can assist RCs in developing and piloting practice models and educational materials
The LEND community benefits from many NCC/RC initiatives and programs.
This work was funded by U22MC03957, awarded as a cooperative agreement between the Maternal and Child Health Bureau/Health Resources and Services Administration, and the American College of Medical Genetics.