We have partnered with CoRDS (Coordination of Rare Diseases at Sanford) to establish this patient registry for Primary Biliary Cholangitis (PBC) to aid in research and treatments for PBC patients.
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 combined with other PBC patients creates a registry. Researchers who are ready to start studies or clinical trials can use information in the registry to help identify those who may be eligible to participate. A patient registry can include blood and imaging test results and a patient’s natural history (other medical conditions and symptoms).

WHY IS A REGISTRY IMPORTANT?

PBC now has two therapies known to slow the progression of the disease and many still do not respond to those treatments. There is no cure. Since this disease is rare it is difficult to gather the information and develop treatments. The registry will collect information from other patients to help researchers have 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 using the link provided above. There you will complete a consent form and sign. If you decide to participate and later change your mind, you will be able to 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 any major changes). You will be sent a reminder from CoRDS to update your information.

WHO WILL HAVE ACCESS TO THE 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 the name, address and other “identifying” information from researchers. This is called “de-identified” because all personal identifiers have been 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 know the code and be able to 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 healthcare. Participation may not benefit you personally, medically or financially. However, your participation may help all those with PBC by increasing the understanding of the disease. Collected data may help speed up research by collecting information scientists can use. Researchers may learn how and if treatments work. Medical professionals may be able to improve how they treat the disease. Participants may receive information 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. You will not be paid for taking part in the registry.

SHOULD YOU STILL PARTICIPATE IF YOU 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 patients with PBC. By joining the registry, you will be helping 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.

NEED MORE PATIENT REGISTRY INFORMATION OR TO JOIN?

Click here

ARE YOU A RESEARCHER?

Researchers interested in accessing the CoRDS Registry, complete the CoRDS Researcher Access Request form and return it by e-mail

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