Member institutions can attend LSSN meetings and have access to the network listserv, networking opportunities, and aggregate database information. Those that participate in the database have open access to their own data for internal purposes.
Who can join?
LSSN is open to institutions or organizations that are interested in promoting the goal of routine screening for Lynch syndrome on newly diagnosed colon and/or endometrial cancers. There are NO membership fees at this time. See Becoming a Member for details.
Becoming a member
Institutions that meet the criteria listed below are eligible for full or affiliate membership, and become LSSN members upon approval of their membership application by the board of directors. The board of directors also determines the eligibility of each institution for the selected membership category.
Organizations that meet the criteria are eligible to become official partners. Official partners have an interest in promoting or performing research related to activities of routine tumor testing to identify individuals with Lynch syndrome. Designation as an official partner of the LSSN does not mean that the LSSN endorses any product or service provided or sold by that partner. Individuals are not eligible to become official partners, although each organization designates one or two representatives as primary contacts. Organizations become official partners upon approval of their application by the board of directors and their acceptance of the partnership terms. For-profit laboratories are not eligible for partner status.
Full members must meet all of the following criteria:
- Institutions (hospitals, clinics, and academic medical centers) currently performing routine* tumor testing on colorectal cancers and/or endometrial cancers
- Commitment to enter data (outlined by the research guidelines) regularly into the LSSN database for surveillance and/or research purposes
- Institutional review board (IRB) approval (either obtained or in process) to enter data (outlined by the research guidelines) into the LSSN database
- A genetic counselor or other qualified healthcare provider (see below) trained in providing cancer genetic services is required to be at the institution
- Access via the genetic counselor or other qualified healthcare provider (see below) must have access (either through clinical responsibilities and/or IRB approval) to both normal and abnormal routine* tumor testing results
Full members must meet ONE of the following criteria:
- Institutions (hospitals, clinics, and academic medical centers) performing routine testing*, but not meeting all criteria for full membership
- Institutions interested in starting routine testing*
Official partners must be interested in promoting routine testing (automatic tumor testing to evaluate for Lynch syndrome at the time of cancer diagnosis/surgery) on all newly diagnosed colorectal and/or endometrial cancers and must fall into the following categories:
- Federal/state agencies
- Professional societies
- Patient support/advocacy groups
- Laboratories (non-profit only) or companies
*Automatic tumor testing to evaluate for Lynch syndrome at the time of cancer diagnosis/surgery
A qualified health care professional (see Cancer Program Standards 2012: Ensuring Patient-Centered Care, www.facs.org/cancer,) is defined as:
- An American Board of Genetic Counseling or American Board of Medical Genetics board-certified/board-eligible or (in some states) a licensed genetic counselor.
- An American College of Medical Genetics physician, board certified in medical genetics.
- A genetics clinical nurse or an advanced practice nurse in genetics, credentialed through the Genetics Nursing Credentialing Commission. Credentialing is obtained through successful completion of a professional portfolio review process.
- An advanced practice oncology nurse who is prepared at the graduate level (master or doctorate) with specialized education in cancer genetics and hereditary cancer predisposition syndromes. Specialized training should be ongoing; educational seminars offered by commercial laboratories about how to perform genetic testing are not considered adequate training for cancer risk assessment and genetic counseling. Certification by the Oncology Nursing Certification Corporation is preferred.
- A board-certified physician with experience in cancer genetics (defined as providing cancer risk assessment on a regular basis).