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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

Palo Alto, Calif. – 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, MD, 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.

About California Pacific Medical Center (CPMC)—A Sutter Health Affiliate
At San Francisco’s California Pacific Medical Center, we believe in the power of medicine. We research the most up-to-date treatments, hire the most qualified individuals, and practice the most modern, innovative medicine available. We deliver the highest-quality expert care with kindness and compassion in acute, post-acute and outpatient services, as well as preventive and complementary medicine. As one of California’s largest private, community-based, not-for-profit, teaching medical centers, and a Sutter Health affiliate, we are able to reach deep into our community to provide education, screening and financial support in some of the city’s most underserved neighborhoods. Like us on Facebook, watch us on YouTube and follow us on Twitter. For more information visit our web site at www.cpmc.org.

The California Pacific Medical Center Research Institute creates an active partnership between clinicians and researchers, merging research institute interests with the needs of the medical center. When associated with a research program, physicians have knowledge and access to more effective treatments and diagnostic technologies. For more information, please visit http://cpmcri.org.

About Stanford Children’s Health and Lucile Packard Children’s Hospital Stanford
Stanford Children’s Health, with Lucile Packard Children’s Hospital Stanford at its core, is an internationally recognized leader in world-class, nurturing care and extraordinary outcomes in every pediatric and obstetric specialty from the routine to rare, for every child and pregnant woman. Together with our Stanford Medicine physicians, nurses, and staff, we deliver this innovative care and research through partnerships, collaborations, outreach, specialty clinics and primary care practices at more than 100 locations in the U.S. western region. As a non-profit, we are committed to supporting our community – from caring for uninsured or underinsured kids, homeless teens and pregnant moms, to helping re-establish school nurse positions in local schools. Learn more about our full range of preeminent programs and network of care at stanfordchildrens.org, and on our Healthier, Happy Lives blog. Join us on Facebook, Twitter, LinkedIn, and YouTube.

Lucile Packard Children’s Hospital Stanford is the heart of Stanford Children’s Health, and is one of the nation’s top hospitals for the care of children and expectant mothers. For a decade, we have received the highest specialty rankings of any Northern California children’s hospital, according to U.S. News & World Report’s 2014-15 Best Children’s Hospitals survey, and are the only hospital in Northern California to receive the national 2013 Leapfrog Group Top Children’s Hospital award for quality and patient care safety. Discover more at stanfordchildrens.org.

About the Primary Ciliary Dyskinesia Foundation
The Primary Ciliary Dyskinesia Foundation is a not-for-profit patient advocacy foundation for individuals with inherited ciliary disorders and their caregivers. As a patient-focused organization, our mission is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia. For more information, please visit www.pcdfoundation.org

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