North American PCD Registry
To inform ongoing in research in PCD, one of our primary areas of focus is to develop and maintain a North American PCD Registry modeled after the extremely successful Cystic Fibrosis Registry. This research tool will provide high-quality, verified longitudinal data from our clinical sites. Additionally, we will incorporate the patient voice into data collection efforts to provide a comprehensive and reliable picture of the full spectrum of PCD. Our goal is ensure our dataset can communicate with high-quality international datasets, as well, accelerating collaboration for the international PCD community.
NAPCDR Goal and Objectives
Clinical registries are complex and detailed, but here is an overview of our primary goal and some of the main objectives we hope to accomplish with the NAPCDR.
Improve the quality of life of individuals with PCD as we work towards a cure by providing needed services and appropriate therapies as dictated by the conduct of adequate and well-controlled studies.
Objective I: Track the natural history and clinical outcomes of PCD
Objective II: Improve and inform clinical practice and patient care quality
Objective III: Expand evidence-based research on genetic, molecular and physiological basis of PCD
Objective VI: Provide a framework for participation/surveillance in/of clinical trials and treatment
Objective V: Inform stakeholder decision-making through tracking patient and caregiver experiences