Will Lead Panels Advising PCORI on Rare Disease Priorities and Design and Conduct of Trials
Washington, D.C. – The Patient-Centered Outcomes Research Institute (PCORI) today announced the first chairs and co-chairs of its two newest multi-stakeholder advisory panels, which focus on clinical trials and rare disease respectively. These individuals will lead their respective panels in providing PCORI expertise on the design and implementation of randomized controlled trials and research priorities in the area of rare disease.
The chairs and co-chairs were approved by PCORI’s Board of Governors during its June 17 meeting.
“Our new advisory panels will benefit greatly from the leadership of these individuals,” said PCORI Executive Director Joe Selby, MD, MPH. “Each panel will be led by a pair of individuals whose complementary expertise and backgrounds will ensure that the panels’ work will be both scientifically rigorous and focused on the interests and needs of patients and those who care for them.”
The newly named chairs and co-chairs are:
Chair: Elizabeth Stuart, PhD, AM, Associate Professor of Mental Health and Biostatistics, The Johns Hopkins Bloomberg School of Public Health, Baltimore, Md. Stuart is an academic statistician with expertise in randomized trials, including handling complexities such as missing data, clustering, mediation analysis, and noncompliance. Previously, as a researcher at Mathematica Policy Research, she worked on a number of large-scale randomized trials of social interventions.
Co-Chair: John D. Lantos, MD, Professor of Pediatrics, Children’s Mercy Hospital, Kansas City, Mo. Lantos directs the pediatric bioethics center at Children’s Mercy Hospital. His research on the ethics of clinical trials has included analyses of ethical issues in neonatology, cancer chemotherapy, renal dialysis, cardiac assist devices, and primary care pediatrics.
Chair: Marshall L. Summar, MD, Division Chief, Genetics and Metabolism and Medical Director, Clinical Research Center at Children’s National Medical Center, Washington, D.C. A geneticist and pediatrician with expertise in rare diseases, Summar’s work has focused on devices and treatments for patients with genetic diseases and adapting knowledge from rare diseases to mainstream medicine.
Co-Chair: Vincent Del Gaizo, founding member and Chair, Friends of Childhood Arthritis and Rheumatology Research Alliance (CARRA), Whitehouse Station, N.J. The father of a systematic-onset juvenile idiopathic arthritis patient, Del Gaizo has been actively involved in the field of pediatric rheumatology research, contributing the patient voice and perspective to research initiatives in these rare diseases.
Brief biographies of the chairs, co-chairs, and other panelists can be found on PCORI’s website, along with panel charters, information on how panelists were selected, and information on their inaugural meetings.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.