麻豆果冻传媒

Leveraging the strengths of international research experts, advancing the diagnosis and treatment of PCD and other rare pediatric illnesses

For release: September 18, 2014

PALO ALTO, Calif. 鈥� An unprecedented collaboration between (CPMC), a Sutter Health affiliate, and Lucile Packard Children鈥檚 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.

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

A first-in-kind conference, which is being held on September 18-19 at CPMC鈥檚 Research Institute (CPMCRI) and co-hosted by Lucile Packard Children鈥檚 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鈥攊n severe cases鈥攁cute 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.

鈥淭he 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,鈥� said Carlos Milla, MD, Associate Professor of Pediatrics at Lucile Packard Children鈥檚 Hospital, and Principal Investigator of the Genetic Diseases of Mucociliary Clearance Consortium Center at Stanford University.

鈥淲e aim to foster ongoing research collaborations between CPMC and Lucile Packard Children鈥檚 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,鈥� 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 麻豆果冻传媒 Children鈥檚 Health, with Lucile Packard Children鈥檚 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鈥攐ffering researchers access to expert perspectives and a rich repository of patient data for medical research.

About California Pacific Medical Center (CPMC)鈥擜 Sutter Health Affiliate

At San Francisco鈥檚 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鈥檚 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鈥檚 most underserved neighborhoods. Like us on , watch us on and follow us on . For more information visit our web site at .

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 麻豆果冻传媒 Children鈥檚 Health and Lucile Packard Children鈥檚 Hospital Stanford

麻豆果冻传媒 Children鈥檚 Health, with Lucile Packard Children鈥檚 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 麻豆果冻传媒 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 鈥� 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 . Join us on , , , and .

Lucile Packard Children鈥檚 Hospital Stanford is the heart of 麻豆果冻传媒 Children鈥檚 Health, and is one of the nation鈥檚 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鈥檚 hospital, according to U.S. News & World Report鈥檚 2014-15 survey, and are the only hospital in Northern California to receive the national 2013 Leapfrog Group Top Children鈥檚 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

Authors

Media Contact:
Dean Fryer
Media Relations Manager
California Pacific Medical Center
笔丑辞苍别:听(415) 600-7484; (415) 232-6463 (pager)
FryerD@sutterhealth.org

Robert Dicks
Director, Media Relations
Lucile Packard Children's Hospital
笔丑辞苍别:听(650) 497-8364
rdicks@stanfordchildrens.org