It is estimated that 1 in every 279 people may be carriers of an alteration in a gene associated with Lynch syndrome, an inherited condition that increases the risk of certain types of cancer. Because of the unique needs of the Lynch syndrome community, a tailored clinical trial search tool is necessary. As an early partner, AliveAndKickn leadership understood ClinWiki’s vision and the importance of the tool.
This was a collaborative effort. ClinWiki created a customized subsite for AliveAndKickn and helped set up the necessary filters. AliveAndKickn recruited volunteers to help annotate the 90+ relevant clinical trials. This included adding keywords to the trials, editing the trial summaries, and adding links to publications and news stories about the trial and the treatments. The keywords and labels added include Microsatellite Instability Status, Karnofsky Allowed Scores, Mutations Targeted, and Therapy Line. Each of the trial summaries were edited to make the trial information clearer and easier for patients and others to understand.
AliveAndKickn.org/ClinWiki is important to patients and those searching for a clinical trial because it provides a better search tool to find relevant clinical trial information more quickly and easily. Clinical trials are a critical step in improving treatment options and outcomes for serious diseases. Clinical trials are how new treatments are proven to work and, ultimately, approved by the FDA. For many cancers, participation in a clinical trial is the first treatment option recommended by expert guidelines from groups like the National Comprehensive Cancer Network. Despite the realization that clinical trials may be the best option, participation in trials is dismally low. For example, less than 5% of cancer patients participate in a clinical trial. Geographic access, burdens of participation for patients and physicians, and restrictive participation criteria are some of the factors causing low clinical trial participation. However, another major problem is simply access to information.
What is Lynch Syndrome?
Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), is a type of inherited cancer syndrome associated with a genetic predisposition to different cancer types. This means people with Lynch syndrome have a higher risk of certain types of cancer. The most significant risk for Lynch Syndrome patients is of developing colorectal cancer. Other cancers include endometrial (uterine), stomach, breast, ovarian, small bowel (intestinal), pancreatic, prostate, urinary tract, liver, kidney, and bile duct cancers. You can learn more about Lynch Syndrome here.
AliveAndKickn’s mission is to improve the lives of individuals and families affected by Lynch Syndrome and associated cancers through research, education, and screening. It is the only nationally recognized patient advocacy organization to provide resources, education and awareness for patients with Lynch syndrome hereditary cancer genetic mutations. AliveAndKickn is the go-to patient advocacy resource for patients, clinicians and researchers. In launching the HEROIC patient registry, AliveAndKickn has developed the first RWE patient driven database and worked with the top Lynch syndrome researchers around the country to support and advance research in the field. To read more about AliveAndKickn, please visit www.AliveAndKickn.org.
ClinWiki.org is a nonprofit 501(c)(3) focused on making clinical trial information easier to access and understand. We are doing this by providing an improved search tool platform and helping build communities around different disease areas and crowdsourcing knowledge, in a similar vein as Wikipedia. How to get involved : Search, Curate, Code, Donate