Pulmonary Care and Research Collaborative Patient Registry

NCT05445817 — Unknown, 150 participants, Pulmonary Care and Research Collaborative Limited

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Registry	NCT05445817
Status	Unknown
Study type	Observational
Enrollment	150 (Estimated)
Sponsor	Pulmonary Care and Research Collaborative Limited (Other); collaborators: Genentech, Inc.
Conditions	Interstitial Lung Disease
Dates	start 2022-07-01 (estimated), primary completion 2023-12-01 (estimated), completion 2024-03-01 (estimated), first posted 2022-07-06, last updated 2022-07-19
Locations	1 site in United States

-Summary

The purpose of this research study is to build and maintain a registry of people with interstitial lung disease (ILD). Medical information collected for this registry may be used to advance ILD and pulmonary research and improve patient care. This is an observational registry. Participants will not receive any investigational treatments or investigational drugs as part of their participation in this registry.

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+Detailed description

The registry will contain longitudinal medical histories of ILD patients. The creation and curation of the registry with utilize release of information services, biomedical informatics methods and human expert reviews. Among the registry's long-term goals is to utilize its data and informatics resources to study and advance ILD diagnosis and treatment. The registry will be developed with a set of capabilities to consistently, repeatedly, and economically build research-grade datasets that allow cohort development from natively unstructured and non-standard phenotypic clinical and imaging data.

+Outcome measures

Primary outcomes

Development and implementation of a database populated with de-identified longitudinal medical histories of interstitial lung disease patients. [Up to 18 months]

Secondary outcomes

Advancing the understanding of the natural course and the treatments of interstitial lung diseases. [Up to 18 months]

+Eligibility

Sex: All, ages: 18 Years to any

Inclusion Criteria:

* People with a confirmed diagnosis of interstitial lung disease by a primary care physician and/or pulmonologist.

Exclusion Criteria:

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+Locations (1)

Facility	City	Country	Status
Pulmonary Care and Research Collaborative, Ltd.	Boston, Massachusetts	United States	Recruiting

+Investigators

Aliaa Barakat, PhD, Principal investigator, Pulmonary Care and Research Collaborative, Ltd.