There are two categories of membership: full and affiliate members. Institutions (hospitals, clinics, and academic medical centers) that meet criteria outlined below are eligible for membership. An institution shall become a LSSN member upon approval of their application for membership by the board of directors. The board of directors will also determine the eligibility of each institution for their selected membership category.
Organizations (including but not limited to federal/state agencies, not-for-profit laboratories, patient support/advocacy groups, and professional societies) that meet criteria (as outlined below) are eligible to be listed as “official partners”. For-profit laboratories are not eligible for partner status. Official LSSN partners have an interest in promoting or performing research related to activities of routine tumor testing to identify individuals with Lynch syndrome. Being designated 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 as official partners, although each organization shall designate one or two representatives as primary contacts. An organization shall become an official partner upon approval of their application by the board of directors, and if they agree to the terms of that partnership.
- Institutions (hospitals, clinics, and academic medical centers) currently performing routine* tumor testing on colorectal cancers and/or endometrial cancers; AND
- Commitment to enter data (outlined by the research guidelines) regularly into the LSSN database for surveillance and/or research purposes; AND
- Institutional review board (IRB) approval (either obtained or in process) to enter data (outlined by the research guidelines) into the LSSN database; AND
- A genetic counselor or other qualified healthcare provider† trained in providing cancer genetic services is required to be at the institution; AND
- A genetic counselor or other qualified healthcare provider† must have access (either through clinical responsibilities and/or IRB approval) to both normal and abnormal routine* tumor testing results
- Institutions (hospitals, clinics, and academic medical centers) performing routine testing*, but not meeting all criteria for full membership; OR
- Institutions interested in starting routine testing*
Organizations interested in promoting routine testing* on all newly diagnosed colorectal and/or endometrial cancers that 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
†The following health care professionals are included (www.facs.org/cancer, Cancer Program Standards 2012: Ensuring Patient-Centered Care): ·
- 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)