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.

 

Objectives of the LSSN:

   - To bring together a group of individuals from multiple institutions who are currently performing or considering universal Lynch syndrome screening on newly diagnosed colorectal cancers and other Lynch syndrome related malignancies.

   - To discuss developing a network/consortia that would enable continued ongoing cooperative efforts to pool educational resources, screening protocols and key patient data.

   - To share existing materials (i.e., educational materials, screening protocols) and to create new resources (i.e. database, website) to organize information from multiple institutions

 

At the first meeting, 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.  As the funding will not allow for all of those interested to attend, one (1) attendee will be randomly selected from member institutions to be selected from those who complete and submit the LSSN application by January 15th, 2012. Please fill in the boxes as indicated and then save the completed form and return via e-mail to DuquetteD@michigan.gov. The application includes questions that will assist in obtaining the additional funding required to ensure the project moves forward.  Please complete to the best of your ability.  Note that institutions that participate in the database will have open access to their own data for internal purposes.  Future access to aggregate data will be determined by the research committee.

 

The LSSN Founding Board of Directors:

Cecelia Bellcross, PhD, MS, CGC (Emory University)

Deb Duquette, MS, CGC and Sarah Mange, MPH (MI Department of Community Health)

Heather Hampel, MS, CGC (The Ohio State University)

Kory Jasperson, MS, CGC (Huntsman Cancer Institute)

Note: While there is extensive cross-affiliation between members of LSSN and the CGA, and the CGA supports the general efforts and goals of the LSSN to improve identification and treatment of those patients and their families affected by Lynch syndrome, the LSSN and CGA are separate groups. The LSSN is responsible for the content of their pages and website information which does not necessarily represent the opinions of the CGA.