EHE Biobank

About the EHE Biobank

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.

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.

Why Should You Donate Your Tissue, Blood or Fluids

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!

How to Contribute to the Biobank

  • If you have an upcoming surgery or doctor’s visit: If you have an upcoming surgery, or any planned visits or procedures that involve blood draws or fluid draining please email us to let our team know about your upcoming procedure. Please let our team know as early as possible.
  • If you have had surgery in the past: Tumor tissue that was taken during a previous surgery might be stored at the hospital where you were treated. This could include tissue from a biopsy, a surgical resection, or transplant. Please email us to provide information to our team about a prior surgery so that we may attempt to locate and obtain your tissue for the EHE Biobank.

Our team will contact you within 24 hours of receiving your inquiry to discuss your upcoming procedure and will guide you through the Informed Consent process. If you have any questions, please email biobank@fightehe.org.

Our Goal is to Make this Process as Simple as Possible

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 within 24 hours. Meanwhile, if you have any questions please reach out to our team.

Connect with our EHE Biobank Coordinator

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.

  • This field is for validation purposes and should be left unchanged.

Patty Cogswell
EHE Foundation Biobank Coordinator

EHE Biobank FAQs

Why should I consider donating my tumor to research?

Tumor and tissue donations help scientists to learn more about cancer. 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!

How do I donate my tumor tissue for research through The EHE Foundation?

Research starts with patients’ authorizing donation of fresh tissue and fluids gathered at the time of surgery or during a scheduled fluid draw, or at a routine doctor’s appointment.  You may donate tissue from any surgical event, fluid that is drained from your body, or blood taken during surgery, a procedure or routine appointments.

To contribute your samples, contact Patty Cogswell, Biobank Coordinator, at 919-619-1811 as early as possible prior to surgery. We will make every effort to collect specimens, and advanced planning allows a better chance of success. Patty will work with you at every step of the way to make the process is as easy and successful as possible.  If you have any questions, please do not hesitate to contact Patty.

Who do I contact to help me donate my tissue for research?

Please contact Patty Cogswell, EHE Foundation Biobank Coordinator at 919-619-1811 or biobank@fightehe.org. Patty will follow-up with you within 24 hours of receiving your inquiry.

Will I receive the result of any research done on my tumor?

You will not receive results on any research done on donated tissue or fluids.

Does donating my specimens affect the surgical procedure?

No. We are requesting only excess fluid and tissue that isn’t needed for your medical care and would generally be discarded.

How does my doctor know what to do once I complete the forms?

Patty will work with your doctor to schedule the collection.  She will ensure that everything is in place at the time of the collection.

Is there a cost to me?

There is no cost to patients for participating in the Biobank. All fees are paid by the Foundation for shipping, processing and storage of biospecimens.

Can I donate my tumor if I'm not receiving care in the United States?

We are only able to include biospecimens from procedures conducted within the United States and Canada. If your surgery or procedure is outside of these countries, unfortunately we are not able to include you in this biobank at this time.

 

Will donation to the biobank affect my care?

It is important to understand that donating to the EHE Biobank in no way affects your care or any research that may go on at the hospital where your surgery is performed. This Biobank is only requesting excess tissue or fluids that is not needed for your medical care.

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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.