How can you be a part of this research? You can help researchers all over the world by participating following the steps below:
Read the Tissue Bank Consent
and the Frequently Asked Questions
about how your tissue will be used and your rights to privacy.
Tissue Bank Consent (WORD version) (PDF version)
Frequently Asked Questions (WORD version) (PDF version)
Download, print and fill out the Donor Signed Request Form
Donor Signed Request Form (WORD version) (PDF version)
Mail or email the Donor Signed Request to:
LMS Paraffin Tissue Block Repository
c/o Sharon Anderson
850 Pointe Pacific Drive #5
Daly City, CA 94014
After we receive your tissue sample, Sharon Anderson, Tissue Coordinator and LMS survivor, will phone you to obtain your medical history pertaining to leiomyosarcoma, (if you checked the yes box.) All information will remain anonymous and confidential, meaning the researchers will not know your name or other identifiers. Only Sharon Anderson will be able to contact you.
About the Leiomyosarcoma Paraffin Tissue Block Repository
The advantage of having a tissue bank is that researchers can go to one place & access enough tissue to conduct research. With only 4 patients in 1 million, LMS tissue samples are scarce and scattered in every hospital across the globe. Often, hospitals refuse to share these precious samples. Researchers have no way to know who or where these LMS patients are.
Sections of the tissue microarray will be made available to LMS
researchers for IRB-approved research that requires clinical outcome
Bottom line, without a tissue bank, it is impossible for researchers to get enough samples to conduct any valuable research on LMS. No samples, no research, no cure!
In 2004-2005, the LMS patient community collected over 300 of their own tissue samples and donated them to Dr. Matt van de Rijn at Stanford University. Using state-of-art bio technology, Dr. van de Rijn conducted an extensive DNA & tissue microarray analysis. This study is by far the most extensive and promising research ever done on LMS.
In 2013, we are conducting another LMS tissue block donation drive. Dr. Matt van de Rijn needs more new samples to continue his extensive study of LMS.
We are depending on the spirit of the LMS community to donate tissue blocks for research. We need as many samples as possible, there are no limits. Together, we can build our LMS tissue bank’s collection and help the researchers help us.