The Siragusa Transplant Center has been a national pediatric research center demonstrating Lurie Children’s long-standing dedication to pediatric research for over 15 years. The physician-researchers on our staff have pioneered influential new methods of studying pediatric liver disease and transplantation and receive substantial funding from the National Institutes of Health.
At the Siragusa Transplant Center, we have pediatric research protocols and clinical trials active every day of the year, providing substantial opportunities for your child and family to participate in ground-breaking research protocols that increase the knowledge base of the medical community and improve pediatric care standards.
And most importantly, at Lurie Children’s, the doctors, nurses and clinical staff members caring for your child are the very same researchers at the forefront of their respective fields. Therefore, you can be assured that your child is getting the best of the best.
Special areas of clinical research at the Siragusa Transplant Center include the following:
Clinical research in these and other specialized areas are currently ongoing and new avenues of research are being pursued constantly.
At the Siragusa Transplant Center, laboratory research is a vital component of our strategy to improve the care opportunities and successes of our patients. Ongoing laboratory research includes investigations into mechanisms involved in the progression of non-alcoholic fatty liver disease, identifying the target of the immune attack responsible for neonatal hemochromatosis and studying the gene expression profiles of patients with progressive familial intrahepatic cholestasis.
Our significant investment in and commitment to clinical and laboratory research allows the Siragusa Transplant Center to lead the way in improving the health of children with liver disease. But, we know our ability to succeed in improving the lives of our patients is enhanced when we engage in collaborative research with other respected and well established centers and organizations. Sharing information and keeping apprised of what others are doing to advance the lives of pediatric patients across the country and world is a key to any successful scientific endeavor. The Siragusa Transplant Center’s investment in research, therefore, includes participation in national research studies and collaboration with other pediatric transplant centers. Examples of our efforts to reach out to the research community include:
1) Membership in the Studies of Pediatric Liver Transplant (SPLIT) Registry Network, 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.
2) Participation as a clinical research center in Childhood Liver Disease Research and Education Network (ChiLDREN), a NIH-funded network of 16 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, and genetically acquired cholestatic diseases. ChiLDREN is a collaborative team of doctors, nurses, research coordinators, and patient support organizations throughout the US 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.
3) Positioning ourselves as one of 12 centers participating in a study sponsored by the National Institutes of Health titled “Immunosuppression Withdrawal for Stable Pediatric Liver Transplant Recipients (iWITH)”. With the information learned from this study, transplant doctors may be able to identify markers that can be used in the future to identify transplant recipients who may be taken off of their anti-rejection medicine.
4) Continued participation in the Pediatric Acute Liver Failure (PALF) study. 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 (ALF). This study also collects information on the neurocognitive function and health related quality of life in pediatric survivors of ALF. Survivors include those patients who spontaneously recover from ALF and those who require liver transplantation.
5) Participation as a site in the NIH-funded study titled Medication Adherence in Children Who Had a Liver Transplant (MALT). Non-adherence is the most important reason for organ rejection in long term survivors of pediatric liver transplantation. In order to address this important risk-factor effectively, this study proposes to test the ability of an objective measure of adherence to anti-rejection medications to predict organ rejection and loss in children who had a liver transplant.
6) Participation in a multi-center study measuring frailty in children awaiting liver transplantation in order to arrive at an accurate and efficient instrument to assess frailty that may be disseminated across transplant centers widely. A validated pediatric clinical frailty instrument would bridge a critical gap in the evaluation of children undergoing transplantation and serve to improve post-transplant outcomes.
7) Participation as a site in the Non-alcoholic Steatohepatitis Clinical Research Network (NASH CRN), which is sponsored by the NIH and includes the collaboration of 9 clinical centers around the country each with a pediatric and adult center. The NASH CRN is a cooperative network designed to propose, develop and undertake trials related to nonalcoholic fatty liver disease (NAFLD).
In addition to external collaboration, the Siragusa Transplant Center collaborates with other departments within the Lurie Children’s family. For example, we are currently collaborating with staff from the Department of Psychology to study cognitive functioning among children affected by liver disease and develop new methodologies for the assessment and improvement of quality of life in pediatric transplant recipients.
At the Siragusa Transplant Center, we will continue to pursue research directly related to the improvement of the health of your child. We will do so by continuing our ongoing commitment to institutional clinical and laboratory research coupled with important collaborative efforts in the field.