Parents Perspective on Immunosuppression
The immunosuppression project team manuscript, “Immunosuppression after pediatric liver transplant: The parents’ perspective” was published in Clinical Transplantation. The team, led by Dr. Emily Perito (UCSF) and Dr. Irini Batsis (Mt. Sinai) surveyed parents about their child’s immunosuppression.
Feasibility of Using PROMs in Clinical Practice
The quality of life project team manuscript, “Feasibility of using a patient-reported outcome measure (PROM) into clinical practice following pediatric liver transplantation: The Starzl Network experience” was published in Pediatric Transplantation. The team, led by Dr. Vicky Ng from SickKids, implemented the Pediatric Liver Transplant Quality of Life (PeLTQL) tool into the clinic workflow at select Starzl Network centers.
Starzl Network Host Boulet Family for Pediatric Transplant Week
Every year, the last week of April marks Pediatric Transplant week. This gives us time to reflect on the importance of the organ transplant donors and recipients whose lives have been changed by the wonderful gift of organ donation. To mark this occasion, the Starzl Network for Excellence in Pediatric Transplantation in partnership with Citrone 33 hosted a special event featuring Toby, Bernadine, and Mariko Boulet. Logan Boulet was involved in the Humboldt hockey team bus crash on April 6, 2018. On April 7, 2018, Humboldt Broncos defenseman Logan Boulet succumbed to his injuries. His parents, Bernadine and Toby Boulet…
Henry L. Hillman Foundation Grant to Support Innovative DARE Initiative
The Henry L. Hillman Foundation is contributing $750,000 in support of the Starzl Network for Excellence in Pediatric Transplantation, www.starzlnetwork.org, at UPMC Children’s Hospital of Pittsburgh. This grant will support DARE, an initiative aiming to enhance the Starzl Network’s ability to transparently share data and streamline best practices in pediatric transplantation. DARE (which stands for Datamart, Adaptive tRial and patient Engagement) will catalyze three critical areas in the Starzl Network’s transplant learning collaborative: 1) new models in transparent transplant data benchmarking; 2) development of an innovative adaptive trial design platform; and 3) synergies that increase patient-reported outcomes to frame comparative…
Starzl Network Launches Innovative Data Mart
In collaboration with United Network for Organ Sharing (UNOS), the Starzl Network for Excellence in Pediatric Transplantation is pleased to announce the launch of an innovative data mart that will allow for a pediatric transplant dashboard and data portal that will include center-specific transplant data elements from participating Starzl Network sites and key aggregate national data on waitlist and transplant outcomes and network priority areas of immunosuppression, perioperative practices, quality of life, and transition of care.
Starzl Network Awarded PCORI Funding
The Starzl Network for Excellence in Pediatric Transplantation in collaboration with UPMC Children’s Hospital of Pittsburgh, UCSF Benioff Children’s Hospital, Starzl Network Patient & Family Voice, and Transplant Families recently received a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award. The two-year award will support our project, PAtient-centered Research in pediatric TransplaNt-Engaging families+Recipients (PARTNER).
Inaugural Meeting Report from the Starzl Network for Excellence in Pediatric Transplantation
Learning Health Networks (LHN) improve the well-being of populations by aligning clinical care specialists, technology experts, patients and patient advocates, and other thought leaders for continuous improvement and seamless care delivery.