The Importance of Biobanking

Biobanking is a brand-new endeavor for us at The EHE Foundation. Researchers retain frozen and stored tissue and biological samples from surgeries, which usually remains within the institution where the procedure takes place. Today, biobanking is a game-changer for rare disease and patient-led organizations like ours. Biobanks accelerate research by safe-guarding high-quality, donated tissue samples from patients in a secure location (a biorepository) and strategically providing that tissue as a resource to the whole research community, not just within one institution. 

In early 2021, The EHE Foundation jumped into these uncharted waters and launched a landmark research study project: the EHE Biobank. Patty Cogswell joined us as our EHE Coordinator. As the founder of Rare Biorepository Consulting, LLC, she has garnered over 35 years in cancer research and brought valuable experience and expertise to this project. Patty is involved in all aspects of the operations of the biobank, from protocol, patient consent and process development, to coordination of tissue collection with patients, hospitals, and the biorepository. Patty also works closely with our Foundation’s research team and Medical Advisory Board to ensure donated tissue samples ultimately get into the hands of key EHE researchers. 

Patty recently shared some exciting news: “I have been amazed by the response to our biobank! In just three months of the biobank being active, we have already talked with over 20 EHE patients interested in tissue donation and collected 4 specimens from EHE patients.” Patty went on to explain, “To put this in perspective, before the Biobank launch in 2021, the Foundation’s efforts to get EHE tissue for one specific research project resulted in eight donations from patients. So, this year we are off to a tremendous start! Thank you to the EHE patient community for your valuable contributions and support of the Biobank!”

The EHE Biobank also helps strengthen our ability to provide donated tissue to further EHE cell line development being conducted through our partnership with the Broad Institute’s Rare Cancer Dependency Map Initiative. Cell lines are the main model to study cancer behavior and response to various drug therapies. 

You can learn much more about tissue donation and biobanking by visiting the EHE Biobank page on our website. If you have been diagnosed with EHE and have an upcoming surgery or procedure scheduled, please contact Patty to learn how you can participate in tissue donation.