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CST: 12/05/2021 10:31:12   

The Lynch Syndrome community comes together to advance research

855 Days ago

AliveAndKickn’s new HEROIC Mosaic Research Community, an online crowdsourcing approach to design research studies, has been chosen as a Commitment to progress by the Biden Cancer Initiative

HAWORTH, N.J., Sept. 21, 2018 (GLOBE NEWSWIRE) -- In 2016, AliveAndKickn launched the HEROIC Registry, a patient driven registry to collect real world and genomic data on Lynch syndrome patients globally.  To build upon that success, AliveAndKickn is now partnering with the University of California San Francisco (UCSF) to launch The HEROIC Mosaic Research Community, a novel research opportunity for our community to collaborate with families, supporters, and top Lynch syndrome researchers to create new research projects that address Lynch Syndrome questions most important to the patients.

Mosaic is an online crowdsourcing approach to design research studies. Instead of researchers designing and implementing studies, Mosaic allows patients, researchers, and community members to collaborate online in writing a research protocol and conducting the research. We encourage everyone to join Mosaic and have your voice in research.

Lynch syndrome is an inherited cancer condition caused by a gene mutation. Affected individuals have a very high chance of developing colorectal cancer, endometrial cancer, and various other types of cancers, often at a young age. One in every 279 Americans has Lynch syndrome, but as much as 95% of these people are not aware of it.

With a stellar line up of internationally recognized Lynch syndrome researchers on board, this project was chosen among many to be part of the Biden Cancer Initiative’s Commitment to progress.  It will be featured at the Biden Cancer Summit on September 21st. Vice President Joe Biden said: “We are at an inflection point in the understanding and treatment of cancer and are starting to break down barriers and change the culture in ways that are needed to deliver what patients deserve – a cancer research and care system that puts saving lives above all else. The commitments we have received, including The HEROIC Mosaic Research Community, bring us closer to developing the right systems, the right culture to get us there.”

“We are thrilled to have the opportunity to connect the community in a novel and forward-thinking way that will advance research that is important to the patients,” adds Robin Dubin, executive director of AliveAndKickn. “We are honored that the Biden Cancer Initiative has chosen our Commitment to be an integral part of the Biden Cancer Summit and their efforts to double the rate of progress against cancer. Through BCIs efforts we can amplify the message to the Lynch syndrome community and beyond about this incredibly important initiative.”

To join the HEROIC Mosaic Research Community, visit https://aliveandkickn.org/heroic-mosaic-research-community. To learn more about AliveAndKickn, the HEROIC Registry and the HEROIC Mosaic Research Community, visit AliveAndKickn.org.

About AliveAndKickn
AliveAndKickn’s mission is to improve the lives of individuals and families affected by Lynch Syndrome and associated cancers through research, education, and screening. To read more about AliveAndKickn, please visit www.AliveAndKickn.org

About Commitments
The Biden Cancer Initiative called on public and private sector organizations to develop new innovative programs and partnerships that will double the rate of progress against cancer and improve the cancer patient experience. Announced at the Biden Cancer Summit, these commitments spotlight collaboration and show demonstrable impact.

About the Biden Cancer Initiative
The Biden Cancer Initiative is an independent nonprofit organization committed to developing and driving the implementation of solutions to accelerate progress in cancer prevention, detection, diagnosis, research, and care, and to reduce disparities in cancer outcomes.

Media Contact:
Robin Dubin
(201) 694-8282 

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