Bulach

This research project focuses on Primary Biliary Cholangitis (PBC), a rare liver disease. The study aims to collect biological samples and health-related medical data to better understand the disease's epidemiology, natural history, treatment response, and outcomes. Existing health data are also used and coded to protect patient identity. Participants will have an enrollment visit and at least one follow-up visit annually. Each year, whole blood samples are collected for biobanking. When available and collected during routine clinical care, liver tissue samples may also be obtained. This cohort forms a platform for scientific research on PBC and allows collaboration with international PBC reference networks. During the study, researchers will monitor disease course, features, response to treatments, overall survival, and transplantation-free survival over three years. The collection of biological samples and detailed health data will help address unanswered scientific questions about PBC. Participants are involved in periodic visits and sample collections to support this long-term research effort.

Researchers are conducting a study to collect detailed prospective data on Primary Sclerosing Cholangitis (PSC), a rare liver disease. The aim is to better understand the disease's epidemiology, natural history, response to treatment, and overall outcomes. This research also includes creating a biobank, which will enable further scientific investigations on various unanswered questions related to PSC. The study also supports collaborations with PSC reference networks internationally. Participants include patients diagnosed with PSC based on established clinical guidelines or those diagnosed at specialized hepatology centers, regardless of age. The study will collect biological samples and health-related personal data, which will be coded to protect privacy. There are no specific interventions or treatments assigned by the study; instead, it serves as a platform for ongoing and future scientific research projects on PSC. During the study, participants' disease course, features, response to treatment, overall survival, and transplantation-free survival rate will be monitored over a period of three years. The collected data and samples will help researchers track disease progression and outcomes. The study focuses on maintaining high-quality data collection and enabling scientific collaboration while ensuring confidentiality through the use of coded data.

Researchers are evaluating two different ways to stop systemic glucocorticoid treatment in adults with inflammatory or autoimmune disorders. This Phase 4 trial compares rapidly stopping glucocorticoids all at once versus gradually reducing the dose over four weeks. The goal is to see if stopping treatment abruptly is not worse than tapering in terms of safety and clinical outcomes over six months. Participants will be randomly assigned to one of two groups: one group will receive prednisone in gradually decreasing doses starting at 7.5 mg daily, reducing the dose each week until stopping after four weeks. The other group will stop glucocorticoids abruptly and take a matching placebo for four weeks. Both patients and study staff will be unaware of which treatment is given. Before starting, all participants will have a Synacthen stimulation test, but the results will be kept blinded until after the study ends. Safety measures include education about stress coverage and signs of adrenal insufficiency, plus emergency medication. During the six-month follow-up, participants will have visits mostly by phone to encourage adherence and feasibility. Safety visits will occur early after stopping glucocorticoids on days 7 and 35, with additional follow-ups on days 90 and 180. Researchers will monitor the time to any incidence of clinical outcomes related to stopping glucocorticoids and assess safety. The total participation time is six months, with careful monitoring to ensure participant safety throughout the trial.