Clinical research
Clinical research and collaboration with other respected and well-established centers and organizations play a crucial role in The Siragusa Transplantation Center's efforts to lead the way in improving the health of children with liver disease.
Examples of our efforts to reach out to the research community in the study of liver diseases include:
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The Siragusa Transplantation Center is one of three centers participating in a NIH sponsored study that explores safe minimization and elimination of
immunosuppression medications after
liver transplantation. The study seeks to do the following:
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Membership in the Studies of Pediatric Liver Transplant (SPLIT) group, the only cooperative effort between transplant centers in the United States and Canada designed to prospectively collect and analyze information necessary for a full understanding of the problems and solutions surrounding liver transplantation in children.
More about the SPLIT group here. -
Participation as a clinical research center in the Biliary Atresia Research Consortium (BARC), a NIH-funded network of 10 clinical sites designed to propose, develop and undertake trials related to
biliary atresia, currently the leading indicator for pediatric liver transplants in the United States.
More about BARC here. -
Continued participation in the Pediatric Acute Liver Failure (PALF) study and examination of the role of
acetaminophen toxicity in acute
liver failure of unknown cause. The PALF study is the first multi-center, multi-national collaborative study aimed at identifying, characterizing and developing management strategies for infants, children and adolescents who present with acute liver failure.
More about the PALF study here. -
Faculty members working collaboratively with others in the areas of outcomes research with the goal of improving health care by helping us to better understand the strengths and limitations of current therapies and how they may best be applied. The Functional Outcomes Group (FOG) is funded through a grant supported by the National Institutes of Health. We are the coordinating center for the grant and oversee the enrollment of 1,000 participants from 23 transplant centers in the United States and Canada. The goal of the study is to understand how well children are doing in various areas of day-to-day functioning that includes development of thinking and reasoning abilities, independent living skills, behavior and health related quality of life.
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Participating in the multi-center Studies of Primary Sclerosing Cholangisits (STOPSC) investigation that collects information on adults and children diagnosed with Primary Sclerosing Cholangitis (PSC). STOPSC has 19 pediatric and adult centers around the country and in Canada participating in the database. This study has the goal of understanding the possible causes and treatment of PSC and autoimmune
hepatitis as well as the effects of the disease on the liver over time.
More about STOPSC here. -
Involvement as a clinical site in the Cholestatic Liver Disease Consortium (CLiC), which is sponsored by the NIH and includes the participation of 11 pediatric centers around the country. CLiC is a collaborative team of doctors, nurses, research coordinators, and patient support organizations throughout the United States and the United Kingdom, working together to improve the lives of children and families dealing with rare cholestatic liver diseases by providing ways for patients to join with doctors and researchers through participation in research studies. The greater the collaboration between doctors and patients and their families, the more we can learn about cholestatic liver diseases.