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Boston Primary Sclerosing Cholangitis Consortium
||Boston Primary Sclerosing Cholangitis Consortium
Primary Sclerosing Cholangitis
||Raffi Karagozian, MD
The purpose of this study is to create a research tissue bank to collect, process, and store samples until researchers need them to do research. Tissue samples in this bank will be used mainly for research on primary sclerosing cholangitis (PSC). You have been asked to take part of this study because you have PSC, another related disease, or are a healthy person.
- Age 14 and older
- Diagnosis of Primary Sclerosing Cholangitis (PSC) OR Diagnosis of non-PSC liver diseases OR Healthy controls
- Inability or unwillingness to provide blood samples
- Patients with known bleeding disorders
This study would not required any special research visits and can be done at the patient’s normally scheduled clinical care visits. Following consent procedures, a research coordinator will confirm your eligibility for inclusion in the study; review your medical history; ask what medications you are taking; and complete study questionnaires with you.
Although we would prefer that you contributed all types of samples for research purposes (Blood, Urine, Stool, Oral), please note that only your contribution of a blood sample (up to 50 mL or 3 tablespoons) is necessary for you to be part of the study. For this study, you may also be asked to allow us to take extra material for research during a clinically indicated procedure and/or to have samples taken strictly for research. The collection of intestinal biopsy samples for this tissue bank will take place during your clinically-indicated colonoscopy and upper endoscopy procedures that you have already-scheduled with your gastroenterologist as part of your regular, clinical care.
We will also look at your medical records now and in the future to update your health information. We will store some of your health information in the study database. We would also like your permission for the tissue bank staff to contact you in the future. This could be at a medical visit or by phone to get updated information about your medical condition or health status.