CHOP Biobank: Making Breakthroughs Together

Susan Furth, MD, PhD, Executive Vice President and Chief Scientific Officer:

Welcome to the CHOP Biobank – a hub of hope and discovery. This CHOP initiative is paving the way for future breakthroughs in pediatric health research. Together, we can unlock the secrets of childhood health and disease.

At CHOP, we have established an institutional biobank, creating a valuable place for health information and samples.

You can imagine the CHOP Biobank as a biological time capsule. Similar to a time capsule preserving artifacts and information, the CHOP Biobank collects and stores biological samples and medical data. These biological time capsules may reveal valuable insights for future researchers.

Little samples may lead to big discoveries.

Kathrine Driesbaugh, PhD, Manager, CHOP Biobank

A biobank is a repository that stores biological samples, such as blood, tissue, and other bodily fluids, along with associated health information. These samples are collected from patients like you and provide researchers with access to a diverse resource of biological materials to be used in various research studies. Pediatric biobanks are essential to promoting the study of health and disease in children.

Imagine a world where we can identify disease markers specific to pediatric illnesses; find patterns between medical history, cellular findings, and diseases; and develop new treatments. That's the potential power of the CHOP Biobank.

All CHOP patients are eligible to participate in the CHOP Biobank. Your participation involves the collection of a biological sample and access to your medical records. There are many ways you can do this:

• If you are receiving a blood draw or undergoing a procedure as part of your clinical care at CHOP, we can access leftover blood or tissue samples that would otherwise be discarded.
• A new blood sample can be collected during a clinical draw or at another time.
• Another option is to provide a saliva sample.
• Less frequently, participants may be asked to provide other optional types of samples, such as urine or stool.

The data and samples will first go into a system that will remove all information that identifies you, such as your name and birthdate. A unique identifier, like a code, will replace identifying information.

In some cases, identifiable information may be shared with permission from a special committee called the Institutional Review Board, and with agreements in place. Without such permission, anyone who works with the samples and data for future research will not know who you are.

Your samples and information may be used for research on any disease or disorder, including studies involving genomics research.

Your participation is completely voluntary, and you can withdraw at any time. Your decision to participate or withdraw has no impact on the healthcare provided at CHOP.

There is no fee or compensation for participating. You should not expect to receive results or information from future research using your samples or medical information. We understand that participating in research may bring inconveniences and risks, like a blood draw or concerns about confidentiality. CHOP takes your confidentiality seriously, with multiple protections in place to ensure your data is secure.

Although there may not be any direct benefits to you, your participation has the potential to help find cures for childhood disease, inform treatment, and contribute to the health of our community and future patients. By participating, you may become a vital contributor to breakthroughs in pediatric health research.

Susan Furth, MD, PhD:

The future of medicine begins with you. At CHOP, we strive to advance healthcare for all children by integrating excellent patient care, innovative research, and quality professional education into all our programs. Research is a central focus, as we are committed to finding treatments and cures for pediatric diseases. We invite you to be a part of our mission.

Your participation goes beyond a single moment, reaching into the future and potentially impacting generations of patients to come.

Are you ready to join the CHOP Biobank?