Network Partners
Why Network Partners are so Strategic
The Starzl Network aims to accelerate progress in transplantation by connecting transplant thought leaders, tech innovators and industry leaders to work together to solve the challenges our patients and families have identified as priority areas. Partners from health care, industry, and charitable foundations allow us to strategically expand the reach and impact of the network.
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Henry L. Hillman Foundation works to ensure that Pittsburgh’s considerable strengths, assets, and advantages are fully leveraged to make it one of the world’s most innovative and forward-looking cities, with a reputation for solving big problems through civic leadership and collaboration.
Henry L. Hillman Foundation has a broad interest in initiatives that are timely and designed to take advantage of an emerging opportunity. The Foundation will prioritize investments that align with the following “portfolio” focus areas: Aging Well, Big Ideas and New Models, Capturing the Next Economy, Healthy Neighborhoods, Strengthening Democracy, and Sustainable Regional Infrastructure.
Ipsen is a global biopharmaceutical company focused on innovation and specialty care. At Ipsen, we develop and commercialize medicines in three key therapeutic areas – Oncology, Neuroscience and Rare Disease. We work to provide hope for people whose lives are impacted by rare bone diseases, such as fibrodysplasia ossificans progressiva; rare liver diseases, such as Alagille syndrome (ALGS) and progressive familial intrahepatic cholestasis (PFIC); along with certain growth disorders. To us, it’s important we put the person living with rare disease first in all that we do. Every day, our more than 5,700 employees worldwide, including over 800 in North America, work diligently to improve the lives of patients around the world. For more information please visit www.ipsenus.com.
The point of using dummy text for your paragraph is that it has a more-or-less normal distriMirum Pharmaceuticals, Inc. is a biopharmaceutical company dedicated to transforming the treatment of rare diseases affecting children and adults. Mirum has three available therapies: LIVMARLI® (maralixibat) oral solution, Cholbam® (cholic acid) capsules, and Chenodal® (chenodiol) tablets.
LIVMARLI, an IBAT inhibitor, is approved for the treatment of cholestatic pruritus in patients with Alagille syndrome in the U.S. (three months and older), in Europe (two months and older), and in Canada. Mirum has also submitted LIVMARLI for approval in the U.S. in cholestatic pruritus in PFIC patients three months of age and older and in Europe in PFIC for patients two months of age and older. Cholbam is FDA-approved for the treatment of bile acid synthesis disorders due to single enzyme defects and adjunctive treatment of peroxisomal disorders in patients who show signs or symptoms or liver disease. Chenodal has received medical necessity recognition by the FDA to treat patients with cerebrotendinous xanthomatosis (CTX).
Mirum’s late-stage pipeline includes two investigational treatments for debilitating liver diseases. Volixibat, an IBAT inhibitor, is being evaluated in two potentially registrational studies including the Phase 2b VISTAS study for primary sclerosing cholangitis and Phase 2b VANTAGE study for primary biliary cholangitis. Lastly, Chenodal has been evaluated in a Phase 3 clinical study, RESTORE, to treat patients with CTX.
To learn more about Mirum, visit mirumpharma.com.
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Regionally, nationally, and globally, UPMC Children’s Hospital of Pittsburgh is a leader in the treatment of childhood conditions and diseases, a pioneer in the development of new and improved therapies, and a top educator of the next generation of pediatricians and pediatric subspecialists. With generous community support, UPMC Children’s Hospital has fulfilled this mission since its founding in 1890. UPMC Children’s is recognized consistently for its clinical, research, educational, and advocacy-related accomplishments, including ranking in the top 10 on the 2021-2022 U.S. News Honor Roll of America’s Best Children’s Hospitals. UPMC Children’s also ranks 15th among
children’s hospitals and schools of medicine in funding for pediatric research provided by the National Institutes of Health (FY2019).
Medistim is a market leader within intra-operative transit time flow measurement (TTFM) and ultrasound imaging, providing the MiraQ™ system to the global market. These systems enable medical professionals to reduce risk and enhance quality of cardiac, vascular and transplant surgery. They provide clinically relevant information that empowers surgeons to make better-informed decisions in the operating room.
Transit time flow measurement (TTFM) is a well-established, easy to use, and rapid quality control method in liver transplantation. The real-time flow volume and pressure information obtained with Medistim’s systems accurately guides the surgeon on the hepatic regional hemodynamic status and response during inflow modulation. This yields a reliable overview of the transplanted liver function before patient closure.
Simultaneous flow and pressure measurements with Medistim systems provide effective guidance for potential flow modulation procedures and in optimizing the liver hemodynamics. To learn more about how our technology is used in Liver Transplant surgery, please click here. on of letters. making it look like readable English.
Why We Started
What is a Learning Health System
In 2006, the Institute of Medicine (IOM) convened a Roundtable on Evidence-Based Medicine to explore innovative strategies for improving health care. IOM’s guiding principle was that medical decision-making and health care systems should be “grounded on a reliable evidence base,” “account for individual variation in patient needs,” and facilitate “the generation of new insights on clinical effectiveness.”1 To realize these goals, the IOM experts envisioned implementing learning health systems (LHS), which would be built to enable “continuous improvement and innovation, with best practices seamlessly embedded in the delivery process and new knowledge captured as an integral byproduct of the delivery experience.”2 LHS aim to integrate research, improvement, management, and patient care such that every patient receives “the right care at the right time…every time.”3 Critical to a successful LHS is the integration of all stakeholders that utilize and interact with the system, in its construction and implementation. This includes patients, families, medical providers, administrators, representatives from supporting industries, and policymakers.
Accelerating Patient Care
The Starzl Network is a Learning Health System designed to transform transplantation by combining transparency, best practices, and patient reported outcomes with innovative technology.
Key components include engaging patients and families as partners in the design of network priorities, database design, and tools to disseminate learning, implement knowledge, and improve practice.
Gaps Our Learning Health System Addresses
Challenges
- Pediatric transplantation is a rare disease
- Variation in practice based on: Geographically, Age, and/or Center
- Time to implementation and dissemination of knowledge is too long
- Lack of evidence-based practice
Approaches
- Collaboration
- Learning from other disciplines
- Include patient voice
- Integration of industry and tech partners
- Use improvement and research strategies
Support Opportunities
For a full list of Starzl Network support opportunities please click here
Please contact, C.J. Confair, cj.confair@starzlnetwork.org, with any questions.