EHE Biobank

Tumor, fluid 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!

The most successful way to donate your tumor tissue or body fluid is by working with the Biobank team before an upcoming surgery or procedure. You provide Informed Consent, authorizing your intent to donate tissue or fluid that is gathered during surgery or a scheduled fluid draw.

Tissue taken from a previous surgery may also be donated to the Biobank after you provide Informed Consent.

It is important to understand that you cannot simply ask your doctor to send tissue to our Biobank at the Cleveland Clinic. All specimens must come through the Biobank Coordinator and with Informed Consent given.

To contribute your tissue or fluid, 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.

Fluid that accumulates in the abdomen (acites) or pleura (pleural fluid) are both important to EHE research. These fluids are drained and discarded as needed for care. The collection and shipment of these fluids is easy, and essential to advance knowledge of EHE.

Fluid can be drained at a hospital, doctor’s office, or in the home. If you are willing to donate, please contact Patty as soon as you know your doctor plans to drain fluid.

Patients have the right to direct the donation of their tissue at the time of surgery. Hospitals will prioritize the collection of tissue required for diagnostic purposes, and remaining tissue can be donated to research. The EHE protocol and Informed Consent provides the required documentation for specimen collection and donation to the Biobank.

All biospecimen donations must go through the EHE Biobank Informed Consent process in order for a hospital to release the tissue or fluid to the Biobank. EHE Biobank donation operates under a transport process that has been set forth by clinical and research experts. Contact Patty to facilitate the collection of tissue from an upcoming surgery or from a past surgery.

Please contact Patty Cogswell, EHE Foundation Biobank Coordinator at 919-619-1811 or [email protected].

You will not directly receive results on any research done on donated tissue or fluids. In the event of any unanticipated pathology findings at the Biobank, information that may be important to guide the course of treatment will be returned to your treating physician.

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

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

If you decide you want to participate in the Biobank, we ask you contact our Biobank Coordinator, Patty Cogswell, to get more information and complete the informed consent before your scheduled date of surgery or procedure. While we appreciate as much advanced notice as possible, we will make every effort to schedule the collection regardless of the time.

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.

If your procedure or biopsy will be outside the continental United States, unfortunately, we are not able to accommodate your tumor tissue donation at this time.

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.

We take your privacy very seriously. Your donated biospecimen and health information will be given a code number to protect your identity. No information directly identifying you will be provided to a researcher, only a unique code.