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5907: Longitudinal study assessing the effect of respiratory exacerbations on quality of life and disease progression in primary ciliary dyskinesia

Summary

This longitudinal study will examine respiratory tract exacerbations in primary ciliary dyskinesia. Given their negative impact on the lives of people with primary ciliary dyskinesia, respiratory tract exacerbations are obvious targets for interventional trials designed to establish evidence-based guidelines for their prevention and treatment. This longitudinal, multicenter study will define clinical features that characterize exacerbations, and examine innovative mobile health monitoring tools, including home spirometry, validated disease-specific quality of life instruments, and novel bedside digital cough monitoring over a one-year period.

Recruiting

Participating Sites

13123 E 16th Avenue
Aurora, Colorado, United States, 80045
https://www.childrenscolorado.org/


Contact:
Principal Investigator: Scott Sagel, MD, PhD

1-720-777-2522

scott.sagel@childrenscolorado.org


Co-Investigator: Jordana Hoppe, MD, MSCS


Co-Investigator: Cullen Dutmer, MD


Co-Investigator: Elena Hsieh, MD


Clinical Research Coordinator: Anna Duong

1-720-777-0946

anna.duong@childrenscolorado.org

555 University Avenue
Toronto, Ontario, Canada, M5G 1X8
https://www.sickkids.ca/


Contact:
Principal Investigator: Felix Ratjen, MD, PhD, FRCP, (C)FERS

1-416-813-6167

felix.ratjen@sickkids.ca


Co-Investigator: Sharon Cushing, MD, MSc, FRCSC


Co-Investigator: Nikolaus Wolter, MD, MSc, FRCSC, FACS


Co-Investigator: Eyal Grunebaum, MD

eyal.grunebaum@sickkids.ca


Clinical Research Nurse Specialist: Sheryl Hewko

1-416-813-7865 ext 307865

sheryl.hewko@sickkids.ca

845 Sherbrooke Street W
Montreal, Quebec, Canada, H3A 0G4
https://www.mcgill.ca/


Contact:
Site Principal Investigator: Adam J. Shapiro, MD

1-514-412-4444

adam.shapiro@muhc.mcgill.ca


Co-Investigator: Donald Vinh, MD


Co-Investigator: Reza Alizadehfar, MD


Co-Investigator: Sam J. Daniel, MD


Co-Investigator: Marc Tewfik, MD


Co-Investigator: Joshua Gurberg, MD

Sandra Pepin, RN

Mylène Roy, PDt, CCRP

4800 Sand Point Way NE
Seattle, Washington, United States, 98105
https://www.seattlechildrens.org/


Contact:
Principal Investigator: Margaret Rosenfeld, MD, MPH

1-206-987-2714

margaret.rosenfeld@seattlechildrens.org


Sub-Investigator: Bre Kinghorn, MD, MS

1-206-987-2714


Clinical Research Coordinator II: Michael 'Cisco' Pascual

1-206-884-2648

michael.pascual@seattlechildrens.org


Research Nurse Manager: Sharon McNamara, MN

1-206-987-3921

sharon.mcnamara@seattlechildrens.org

450 Serra Mall
Stanford, California, United States, 94305
https://www.stanford.edu/


Contact:
Principal Investigator: Carlos E. Milla, MD

cmilla@stanford.edu


Co-Investigator: Meghan Marmor, MD

jmmarmor@stanford.edu


Co-Investigator: Jacquelyn M (Zirbes) Spano, DNP, RN, CNP, CCRC

1-650-721-1132

jmzirbes@stanford.edu

101 Manning Drive
Chapel Hill, North Carolina, United States, 27514
https://www.unc.edu/


Contact:
Principal Investigator: Stephanie D. Davis, MD


Co-Investigator: Thomas Ferkol, MD

1-314-454-2694

thomas_ferkol@med.unc.edu


Co-Investigator: Michael Knowles, MD


Co-Investigator: Margaret Leigh, MD


Co-Investigator: Maimoona Zariwala, PhD


Co-Investigator: Adam Kimple, MD, PhD


Co-Investigator: Eveline Wu, MD


Co-Investigator: Tim Vece, MD


Co-Investigator: Leigh Anne Daniels, MD, MPH


Project Officer: Kelli M. Sullivan, MPH

1-919-962-9786

kelli_sullivan@med.unc.edu


Co-Investigator: Kenneth Olivier, MD, MPH

1 Brookings Drive
St. Louis, Missouri, United States, 63130
https://wustl.edu/


Contact:
Principal Investigator: Amjad Horani, MD

horani_a@wustl.edu


Research Coordinator: Jane Quante, RN

1-314-454-2353