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About Sickkids
About SickKids

October 24, 2014

Dr. Sharon Dell receives NIH grant to continue rare airway disease research

By Ashley Durk

Dr. Sharon Dell, Staff Respirologist and Senior Associate Scientist at The Hospital for Sick Children (SickKids), is one of several recipients sharing a $29-million renewal grant from the National Institutes of Health’s (NIH) Rare Diseases Clinical Research Network (RDCRN). The funds will support the continuation of Dell’s research in Primary Ciliary Dyskinesia (PCD), a rare genetic airway disorder.

Dell is a principal investigator for the Genetic Diseases of Mucociliary Clearance Consortium (GDMCC), a network of research centres that study rare lung diseases that cause chronic airway infections and lung damage. The GDMCC is one of 22 groups within the RDCRN.

“This grant is critical in supporting our PCD research program at SickKids,” says Dell, who also directs the SickKids PCD Clinic, which she established in 2004. “PCD is a rare disease so it is imperative that we work together to make discoveries that will improve patient care. This funding will allow us to develop screening and diagnostic testing strategies to help identify and diagnose children with this disease close to the time of birth, giving them the best chance of keeping their lungs healthy and having a long life.”

The five-year funding will go towards the development of clinical strategies for diagnosing PCD such as the use of nasal nitric oxide screening, neonatal characteristics specific to PCD, and the effectiveness of genetic testing.

SickKids has been an active site within the GDMCC for the recruitment of children for diagnostic and observational studies. Past RDCRN funding helped develop a health-related quality of life measure for children and teens with PCD, an initiative that was co-led by Dell.

Since its inception in 2003, the RDCRN has enrolled over 5,000 patients in 37 rare disease clinical studies. Network institutions have also developed training programs for clinical investigators interested in rare-disease research. This year’s SickKids grant program trainees are Tara Mullowney, Respiratory Medicine Fellow, and Shaidah Deghan, Medical Student. SickKids’ Melody Miki serves as the Clinical Research Nurse Coordinator for the grant.

Other GDMCC institutions include University of North Carolina at Chapel Hill, St. Michael’s Hospital, Toronto, Washington University in St. Louis, University of Washington, University of Colorado’s Denver Children's Hospital, Stanford University, National Institute for Allergy and Infectious Diseases, National Jewish Health, and University of Chicago.