Join a Current Trial

National Institutes of Health PSC Trials

The National Institutes of Health (NIH) offers a web site of clinical trials specific to PSC. You can visit the site by clicking here.

• http://www.clinicaltrials.gov/ct2/results?term=primary+sclerosing+cholangitis

At this time the following research trials are recruiting participants who have been diagnosed with PSC. These trials may or may not be related to the NIH trials.

PROGRESS (PSC Resource Of Genetic Risk, Environment and Synergy Studies)

The Mayo Clinic is conducting a trial that is looking for participants who have PSC. The research website lists goals and participation requirements; click here for more information.

• http://mayoresearch.mayo.edu/mayo/research/
  lazaridis_lab/genomics_of_psc.cfm

The study asks for a small blood sample, and asks participants to fill out a questionnaire, all to examine genetic and environmental factors relating to PSC.

Research Study of Primary Sclerosing Cholangitis and Vancomycin

Massachusetts General Hospital is seeking volunteers, ages 18 years and older, with a known diagnosis of primary sclerosing cholangitis (PSC) for a research study to see if a medication (vancomycin) improves liver disease symptoms, such as itchiness and fatigue and liver function tests (blood tests).

Participants should not be pregnant or breastfeeding, should not have any known allergy to vancomycin and should not have normal liver function tests.

Participation may last up to one year. Subjects will take vancomycin daily for 52 weeks and have follow up visits every six weeks. Laboratory tests will be done at screening and every 12 weeks. A liver biopsy and MRCP (MRI of the liver) will be done at the beginning and at the end of the study. A flexible sigmoidoscopy will be done at the beginning of the study and at week 12.

For more information, please contact Melissa at 617 724-3238.

PSC Study at University of California/Davis

Dr. Eric Gershwin and Christopher Bowlus of the University of California are beginning a new study for PSC and PBC patients: Prevalence And Clinical Utility Of pANCA, ASCA, ANTI-OMPC, AND ANTI-CBIR1 In Patients With Primary Sclerosing Cholangitis.

To participate, subjects must be 18 years or older, have a diagnosis of PSC and not have had a transplant. They must provide a release of medical information along with a colonoscopy report and MRI or ERC documenting their PSC. Participation also requires a blood sample to be shipped to the researchers. The team has other studies that require fresh blood for immunologic study. Any patients in Northern California that would like to participate can contact Mia Minoletti at

• mia.minoletti@ucdmc.ucdavis.edugenomics_of_psc.cfm

• Call 916-703-5501 to arrange for an appointment at the center:
  University of California, Davis Medical Center
  TICON I Building
  2000 Stockton Blvd. Suite 100
  Sacramento, CA 95817

The university study does not have funding for collecting blood at other locations. The participant must be able to travel to Sacramento, unless the patient's doctor is interested in coordinating the patient's blood donation with Dr. Bowlus.

Different T-cells have specialized receptors to match specific antigens. Dr. Bowlus and Dr. Gershwin will study T-cells in PSC (and PBC) patients to determine if their blood displays a high concentration of T-cells with the same receptors. The goal of the study is to explore and identify a correlation, if any, between certain types of T-cells and PBC and PSC.

This is particularly important research. If the doctors identify a specific type of T-cell that is especially concentrated in PSC patients, we will be one big step closer to finding the cause of and perhaps the cure for PSC.

PSC in Twins

Genetically identical twin pairs in which one or both siblings have PSC are an enormous resource to determine the environmental factors contributing to the disease. Researchers at the Division of Rheumatology at UC Davis are searching for patients with PSC that have a twin, whether identical or fraternal. Dr. Carlo Selmi is leading a study on these issues and is interested in such twins whether they both have PSC or not and whether they are identical or not. The search for twins is ongoing throughout the world, if you know of anybody who is a patient with PSC and has a twin, please contact us using the email below. The study will only include a blood draw and a simple questionnaire for both twins.

• cfselmi@ucdavis.edu

Tell Your Health Care Story

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at http://chronicdisease.survey.sgizmo.com.

If you have a chronic illness such as Crohn's disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so.

If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.