The EHE Biobank is an open, ongoing collection of tissue samples and other biospecimens, including blood and bodily fluids donated by people with EHE. The Biobank has been developed by The EHE Foundation with the generous support of private donations and grants to accelerate EHE research. The EHE Biobank preserves EHE biospecimens and makes them available to qualified researchers whose research has been reviewed for its science and the protection of the rights of those who donate.
Because EHE is a rare cancer, researchers are limited by the lack of available tissue with which to conduct research. Until recently, there has not been any substantial collections of EHE tissue or body fluids to support ongoing or new research. The EHE Biobank was established in fall of 2020 and will provide researchers with invaluable medical and scientific information that will help understand and treat patients today, and hopefully find better treatments and a cure for EHE in the future.
Research is the key to developing new treatments and cures for diseases, and researchers need tumor tissue and blood from EHE patients to understand disease progression and speed early development of new drugs and therapies. As a rare cancer patient and a Biobank donor, you will be directly contributing to EHE research!
Our team will contact you to discuss your upcoming procedure and will guide you through the Informed Consent process. If you have any questions, please email [email protected].
Once you provide our team with information about your upcoming surgery or procedure, you will be asked to sign a Consent Form. This will allow our team to inquire about your upcoming surgery or procedure, or any tissue collected in the past. Additionally, this will give our team permission to collect any medical information from your doctor that may be directly relevant to the tissue or fluids you donate. Once this step is complete, your job is done. Our team will take care of contacting the hospital and coordinating the transfer of the tissue or fluids to the EHE Biobank.
Please contact our team with your surgery or procedure information as early as possible. As soon as you provide us with information about your upcoming surgery or procedure, we will be in touch with you. In the meanwhile, if you have any questions please reach out to our team.
If you are interested in more information on the EHE Biobank and the tissue donation process, please submit your contact info below. You will be contacted within 24 hours by Patty Cogswell, EHE Biobank Coordinator.
EHE Foundation Biobank Coordinator
The EHE Foundation is a proud partner of the Rare Cancer Dependency Map Initiative in partnership with the Broad Institute and Rare Cancer Research Foundation.