Registry

In partnership with CoRDS (Coordination of Rare Diseases at Sanford), the PBCers Organization has created a patient registry for Primary Biliary Cholangitis (PBC) to aid in research and treatments for people with PBC.

What Is A Patient Registry?

A registry is a place to store detailed information about people with a specific disease, syndrome or a group of diseases. When you enroll in a patient registry, you create your own personal health record. Your record, together with those of other PBC patients, forms a registry. Researchers can use registry information to search for commonalities, or to help identify those who may be eligible to participate in clinical trials. A patient registry can include blood and imaging test results, along with a patient’s natural history (other medical conditions and symptoms).

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Researcher Access

PATIENT REGISTRY

Why Is A Registry Important?

While there are two therapies known to slow the progression of PBC, many people still do not respond to those treatments – and there is no cure. Since this disease is rare, it is difficult to gather sufficient patient information to develop treatments. This registry is intended to collect information from people with PBC that researchers can use to gain a better understanding of PBC.

What Kind of Commitment Do You Need To Make To Participate In A Registry?

To participate in our patient registry, you will connect with CoRDS, complete a consent form and sign up. If you later change your mind, you can withdraw from the registry. You will be asked to update your registry information at least once a year (more often if you like or if you have had any relevant medical or life changes). CoRDS will send you an annual reminder to update your information.

Who Will Have Access To Records In The Registry?

The goal of the registry is to share detailed medical and other information with scientists and other researchers while still protecting your privacy. All the information you provide is maintained in a safe HIPAA and FISMA (Federal Information Security Management Act) compliant environment. Any information that can identify you will not be shared without your approval. Your privacy will be protected by hiding your name, address and other personally-identifying information from researchers. They see only “de-identified” data that has had all personal identifiers removed. Any information that identifies you is labeled with a code number, encrypted, stored and protected with a password. Only authorized people working with the registry will be able to unlock the code and identify you if needed. Approved scientists, researchers and clinicians will only be allowed to see the de-identified data for their studies.

Why Should I Participate In The Registry?

Participating in the registry is completely voluntary and will not affect your health care. While it may not benefit you personally, medically or financially, your participation may help all those with PBC by increasing the understanding of this disease. Collected data may help speed up research by collecting information that scientists can use. Researchers may learn how and if treatments work. Medical professionals may be able to improve how they treat PBC. CoRDS registrants may learn about opportunities to participate in research, clinical trials and studies.

What Is The Cost, or Will I Be Compensated For Taking Part In The Registry?

There is no charge to participate in the registry, and you will not be paid for taking part .

Should I Still Participate If I Don’t Want To Be Involved In A Clinical Trial?

Even if you do not want to participate in a clinical trial or you are not qualified, your information will still be useful to researchers who are trying to learn more about people with PBC. By joining the registry, you will be helping them to better understand the geographical spread of the PBC population, the progression of the disease, evaluation of treatments and tests, monitoring the safety of medications, and more.

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Are You A Researcher?

Researchers interested in accessing the CoRDS Registry should complete the CoRDS Researcher Access request form and return it by email.

Contacts

Registry

What Is A Patient Registry?

Why Is A Registry Important?

What Kind of Commitment Do You Need To Make To Participate In A Registry?

Who Will Have Access To Records In The Registry?

Why Should I Participate In The Registry?

What Is The Cost, or Will I Be Compensated For Taking Part In The Registry?

Should I Still Participate If I Don’t Want To Be Involved In A Clinical Trial?

Learn More or Join Now

Learn More or Join Now

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