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    Primary Ciliary Dyskinesia Conference at CPMCRI

    Primary Ciliary Dyskinesia Conference at CPMCRI will Feature Top International Experts in the Treatment of Genetic Lung Disorder

    Leading Bay Area medical centers collaborate to boost research into rare childhood diseases Leveraging the strengths of international research experts, advancing the diagnosis and treatment of PCD and other rare pediatric illnesses

    September 16, 2014

    An unprecedented collaboration between California Pacific Medical Center (CPMC), a Sutter Health affiliate, and Lucile Packard Children’s Hospital Stanford is anticipated to significantly improve the detection and management of primary ciliary dyskinesia (PCD), a genetic lung disorder without cure affecting thousands of children worldwide.

    “It is critical to further knowledge into this illness, and other rare pediatric diseases, for which accurate diagnoses and effective treatments are elusive,” said Heidi Bjornson-Pennell, Board Member and Development Chair for the PCD Foundation, which is partnering with CPMC and Lucile Packard Children’s Hospital on specific projects. “We are grateful for the advancement of research into PCD enabled by this collaboration between leading medical centers.”

    A first-in-kind conference, which is being held on September 18-19 at CPMC’s Research Institute (CPMCRI) and co-hosted by Lucile Packard Children’s Hospital and the PCD Foundation, will highlight new perspectives on research into PCD, with international experts presenting their latest findings. PCD is a poorly understood genetic disorder characterized by chronic infections of the respiratory tract, progressive deterioration of lung function, and—in severe cases—acute respiratory failure. The disorder most commonly develops in infants, but is often misdiagnosed, and continues to affect patients into adulthood.

    Early diagnosis is critical to improving patient quality of life and life expectancy. The collaboration between the two hospitals will leverage the strengths of each center in boosting pediatric care and research into PCD and other complex, rare pediatric illnesses. Children and their families living with rare diseases are often alone with their needs and challenges; collaborative, multidisciplinary, and robust research efforts are necessary to improve patient care in this field.

    “The upcoming PCD conference will provide a much-needed forum for discussion about new directions in the diagnosis and treatment of this condition, and to present current challenges and opportunities in advancing patient care in rare diseases,” said Carlos Milla, M.D., Associate Professor of Pediatrics at Lucile Packard Children’s Hospital, and Principal Investigator of the Genetic Diseases of Mucociliary Clearance Consortium Center at Stanford University.

    “We aim to foster ongoing research collaborations between CPMC and Lucile Packard Children’s Hospital, and among a broader network of clinical centers not only in the international PCD community but extending also to other areas of pediatric care,” said Lorry Frankel, M.D., Chair of the Department of Pediatrics at CPMC. Both Dr. Milla and Dr. Frankel will deliver opening remarks at the conference.

    CPMC and Stanford Children’s Health, with Lucile Packard Children’s Hospital at its core, are among the largest hospital systems in the U.S., comprised of vast clinical trial networks, highly specialized physician-scientists, and strengths in both high-impact diseases and rare disorders—offering researchers access to expert perspectives and a rich repository of patient data for medical research.