Research

When the PBCers Organization began, little was known about this rare disease. There was very little research or awareness, and most people with PBC were not diagnosed until the later stages of disease. Since then, much has changed. More research and better awareness is leading to earlier diagnosis, helping patients to receive treatment sooner.

For the majority of people with PBC, this is great news. However, there are those who do not adequately respond or who are unable to tolerate the current treatments and are still progressing to transplant.

We continue to work with researchers, but our fight will not be over until we find the cause and cure for PBC. It is critical to gain more knowledge of the disease and find treatment options. Research cannot move forward without the participation of people with PBC in the patient registry, clinical trials, and donating to our research fund.

Here is a list of PBC treatment clinical trials. Explore these links to learn more about current research efforts. Please help!

Explore PBC Clinical Trials

Here is a list of PBC treatment clinical trials. Explore these links to learn more about current research efforts. Please help!

SPONSOR	NIH NUMBER²	STUDY NAME¹	MEDICATION	INDICATION	STATUS
Calliditas	NCT05014672	Transform	Setanaxib	Add on or alternative therapy to UDCA	Recruiting
COUR	NTC05104853	CNP-104	CNP-104	Add on or alternative therapy to UDCA	Recruiting
CymaBay	NCT06051617	AFFIRM	Sedelapar
CymaBay	NCT03602560	ENHANCE	Seladelpar
CymaBay	NCT06060665	IDEAL	Sedelapar
CymaBay	NCT04620733	Response	Seladelpar	Add on or alternative therapy to UDCA	Completed with results
Escient	NCT05525520	Pacific	EP547	Pruritus (itching)	Recruiting
Ipsen	NCT04526665	Elative	Elafibranor	Add-on therapy	Active, not recruiting
GSK	NCT04950127	Glisten	Linerixibat	Pruritus (itching)	Recruiting
Intercept	NCT05239468	Combio-214	OCA & Bezofibrate	Add-on therapy	Active, not Recruiting
Mirum	NCT05050136	Vantage	Volixibat	Pruritus (itching)	Recruiting
UNMC	NCT01200082	Sulfation of Bile Acids	Sulfation of Bile Acids	Possible biomarker of progression	Active, not recruiting
Yale University	NCT03684187	Mindfulness in PBC	Mindfulness in PBC	Add-on therapy	Recruiting
Zydus	NCT05133336	EPICS3	Sarolgitazar Magnesium	Alternative therapy to UDCA	Active, not recruiting
Kowa Research Institute, Inc.	NCT06247735	K-808	Pemafibrate	Add on or alternative therapy to UDCA	Recruiting

This list has been provided by the research sponsors. The PBCers Organization has no input into the content provided and accepts no liability for participation in any clinical trial, whether on this list or not.

Link Information:

¹ Each study name is a link to sponsor-supplied information.

² The NIH Number is a link to the study at www.clinicaltrials.gov

NOTE: The PBCers Organization does not endorse or promote any specific clinical trial or potential treatment. This information is supplied for your use to educate yourself on potential clinical trials you may qualify for and be interested in participating in. Always discuss potential enrollment in a clinical trial with your liver specialist, as each person with PBC is different, with their own medical situation.

Antidote Match

Antidote Match allows you to quickly and easily search open, recruiting trials listed in ClinicalTrials.gov. Simply answer a few questions to find potential trial matches.

By selecting “START” above, you will be leaving the PBCers Organization website and accessing your search results on Antidote’s website. The PBCers Organization does not endorse and is not affiliated with any of these clinical trials or medical facilities. We offer access to Antidote Match for your information only.

Join the Patient 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).

Join the Registry

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.

Learn More or Join Now

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

Research

Explore PBC Clinical Trials

Antidote Match

Join the Patient 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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