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The National Leiomyosarcoma Foundation is Joining a Tumor Sample Project to Advocate for LMS Patients

BY National Leiomyosarcoma Foundation
PUBLISHED June 20, 2017
Rare cancer patients can donate tumor samples to benefit future research on their disease using the new online service, Pattern.org. The National Leiomyosarcoma Foundation is joining this project to advocate for LMS patients.

Pattern.org is offering an innovative research program for rare cancer patients. This program allows patients with rare cancers to donate their fresh tumor tissue through surgery or biopsy.

Patients consent directly online, then participate from their chosen hospital without having to change their treatment plans or fly to a new location for medical care.

Tissue donated through Pattern.org is sent to the Broad Institute of MIT and Harvard where it is used to create cancer models called cell lines. These models are a critical tool needed by scientists to research, create, and test treatments for rare forms of cancer. In a survey of cancer researchers from January 2017, lack of access to these cancer models was cited as the top impediment to research.

Several rare cancers were chosen to be included in the initial phase of this new cell line effort, including Leiomyosarcoma (LMS). The National LeioMyoSarcoma Foundation (NLMSF) has partnered with Pattern.org, the Rare Cancer Research Foundation, and the Broad Institute’s Cancer Cell Line Project to advocate for LMS patients in this novel patient-to-research program.

LMS patients expecting to undergo a surgery or biopsy can now visit Pattern.org and learn about the option to donate their tumor tissue to LMS research. By visiting the Pattern.org website, patients learn:
  • More about the Broad’s Cancer Cell Line Project
  • Why tumor tissue donation is valuable to research
  • How Pattern.org helps patients provide voluntary consent to donate their tumor tissue
Once an LMS patient submits a consent to donate their tumor tissue through the site, their role is done. The rest of the process will be handled completely by the Pattern.org team who work directly with the patient’s surgical oncologist or biopsy staff to coordinate the tissue donation.

To protect patient privacy, the tissue sample will be de-identified according to strict guidelines established by the Broad Institute and corresponding HIPAA regulations. After removal of all personal information, Pattern.org transports the tissue sample directly to the Broad Institute for processing. There is no cost to the patient for participating in this program and the patient will receive no diagnostic or other information from Pattern.org or the Broad Institute regarding their tumor tissue sample.

If a successful cell line model is created from donated tissue sample, the model and any associated data will be made available to any qualified researcher in the world. By openly sharing data, patients’ donations provide an invaluable resource for researchers to better understand rare cancers like leiomyosarcoma— potentially aiding in the discovery of treatment options.

About Pattern.org
Pattern.org is a website that allows cancer patients to donate their tissue samples to further research on that cancer type. It is a direct-from-patient online platform, working with top cancer labs across the country to build research tools to advance cancer research. The project is entirely built and maintained by the Rare Cancer Research Foundation, a non-profit organization based in the US.
 
About NLMSF
The National LeioMyoSarcoma Foundation is committed to LMS patient-family/caregiver education and support, patient advocacy, research funding and organizational collaborative partnerships in order to support the LMS community and advance treatment breakthroughs.
 
For more information, please contact barbara@pattern.org or annie@nlmsf.org.
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