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| Name | Class |
|---|---|
| Genentech, Inc. | INDUSTRY |
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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.
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.
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| Measure | Description | Time Frame |
|---|---|---|
| Development and implementation of a database populated with de-identified longitudinal medical histories of interstitial lung disease patients. | Up to 18 months |
| Measure | Description | Time Frame |
|---|---|---|
| Advancing the understanding of the natural course and the treatments of interstitial lung diseases. | Up to 18 months |
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Inclusion Criteria:
Exclusion Criteria:
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People with a confirmed diagnosis of interstitial lung disease by a primary care physician and/or pulmonologist.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Aliaa Barakat, PhD | Contact | 617-895-6636 | aliaa.barakat@ildcollaborative.org | |
| Arthur Dea, BA | Contact | 617-895-9879 | arthur.dea@ildcollaborative.org |
| Name | Affiliation | Role |
|---|---|---|
| Aliaa Barakat, PhD | Pulmonary Care and Research Collaborative, Ltd. | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Pulmonary Care and Research Collaborative, Ltd. | Recruiting | Boston | Massachusetts | 02130 | United States |
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| ID | Term |
|---|---|
| D017563 | Lung Diseases, Interstitial |
| D054990 | Idiopathic Pulmonary Fibrosis |
| D012507 | Sarcoidosis |
| D000542 | Alveolitis, Extrinsic Allergic |
| D011658 | Pulmonary Fibrosis |
| ID | Term |
|---|---|
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D008232 | Lymphoproliferative Disorders |
| D008206 | Lymphatic Diseases |
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| D006425 | Hemic and Lymphatic Diseases |
| D006968 | Hypersensitivity, Delayed |
| D006967 | Hypersensitivity |
| D007154 | Immune System Diseases |
| D012130 | Respiratory Hypersensitivity |
| D006969 | Hypersensitivity, Immediate |
| D005355 | Fibrosis |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |