The Michigan Department of Community Health with one-time limited funding from the Centers for Disease Control & Prevention (CDC) Office of Public Health Genomics convened a Lynch syndrome universal screening network planning meeting on September 23, 2011 in Chicago, Illinois at the O’Hare Hilton. At this first meeting, 35 participants from multiple institutions in the United States who are currently performing or considering universal Lynch syndrome screening on newly diagnosed colorectal cancers met to discuss developing a collaborative network.  Representatives from NIH, CDC, academic medical centers, cancer facilities, and health departments were in attendance (pictured below). The group unanimously agreed that such a network focused on universal Lynch syndrome screening did not exist and was greatly needed.  The group decided to form the Lynch Syndrome Screening Network (LSSN) to enable ongoing cooperative efforts.
At the first meeting, the following objectives were addressed:

  • Preliminary database development,
  • Goals & content outline for educational resources,
  • Initial planning regarding the LSSN structure,
  • Forming subcommittees (database, educational resources, funding, governance/structure/membership, research).

Since that time, the group has been successful in obtaining Epidemiology and Genetics Research Program (EGRP) NIH funding to hold a follow-up LSSN meeting in early 2012.