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| Name | Class |
|---|---|
| Boehringer Ingelheim | INDUSTRY |
| DARTNet Institute | OTHER_GOV |
| American Academy of Family Physicians National Research Network (AAFP NRN) | UNKNOWN |
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APEX COPD is registry to provide a mechanism to standardize, store and utilize data to enable greater power to answer key research questions, and to improve patient outcomes in COPD primary care.
In the process of creating of a high-quality longitudinal dataset combining COPD templates and patient reported information and outcome (PRIO) to evaluate outcomes the APEX COPD registry supports changes and improvements in medical practice and deliver high quality research through the following mechanisms:
The APEX COPD steering committee (SC) comprise of collective clinical expertise, scientific knowledge and experience in EHR, databases and research, forming an essential element of the APEX COPD registry. The SC plays an essential role in the development and governance of the APEX COPD registry, representing the sites participating, and providing the expertise necessary to implement and drive the initiative. Within this committee a smaller management group guides the operational aspects of the registry.
The research database uses the Observational Medical Outcomes Partnership (OMOP) v5 Common Data Model (CDM) and the OMOP terminology will be updated at least bi-annually. Standardized OMOP Concept IDs will utilize SNOMED, RxNorm and may be adjusted to improve data compatibility with other OPC COPD databases.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Advancing Patient Experience (APEX) in COPD | Other | Involves both EMR and PRIO data |
| Measure | Description | Time Frame |
|---|---|---|
| Describe and characterize the COPD primary care patient population's natural history | Baseline data from electronic health record (EHR) and patient reported information and outcomes (PRIO). The EHR data will be updated every three months. | 31 December 2018 to 31 December 2022 |
| Evaluate the comparative clinical, safety and cost effectiveness of current COPD treatments by class of therapy for COPD overall and in specific patient groups/phenotypes, to understand the predictors of response to available COPD treatment options | Patient reported information and outcomes (PRIO) will be collected annually and before very visit to their doctor | 31 December 2018 to 31 December 2022 |
| Measure | Description | Time Frame |
|---|---|---|
| Improve quality of care, and primary care patient outcomes | 31 December 2018 to 31 December 2022 | |
| Understand the clinical phenotypes | 31 December 2018 to 31 December 2022 | |
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Inclusion Criteria:
Exclusion Criteria:
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The study populations comprise of patients aged over 35 years and receiving care for COPD at participating primary care sites across the US in accordance with local regulatory/ethical requirements.
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| Name | Affiliation | Role |
|---|---|---|
| Wilson D Pace, MD | Professor | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Miramont Family Medicine | Fort Collins | Colorado | 80528 | United States | ||
| Urban Family Practice |
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| ID | Term |
|---|---|
| D029424 | Pulmonary Disease, Chronic Obstructive |
| ID | Term |
|---|---|
| D008173 | Lung Diseases, Obstructive |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D002908 | Chronic Disease |
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| Respiratory Effectiveness Group |
| OTHER |
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| Understand the current burden and minimize side effects |
| 31 December 2018 to 31 December 2022 |
| Support the development of effective and efficient diagnostic routines | 31 December 2018 to 31 December 2022 |
| comparing clinician-diagnosed COPD at baseline against established | 31 December 2018 to 31 December 2022 |
| Describe disease management pattern | 31 December 2018 to 31 December 2022 |
| Assess impact of inhaler technique | 31 December 2018 to 31 December 2022 |
| Describe factors associated with treatment choice at baseline | 31 December 2018 to 31 December 2022 |
| Describe risk factors | 31 December 2018 to 31 December 2022 |
| Assess the occurrence of exacerbations and other conditions | 31 December 2018 to 31 December 2022 |
| Assess biomarker data and estimate their predictive value for disease diagnosis | 31 December 2018 to 31 December 2022 |
| identify patients who may be eligible for participation in future research studies | 31 December 2018 to 31 December 2022 |
| Buffalo |
| New York |
| 14201 |
| United States |
| MetroHealth System | Cleveland | Ohio | 44109 | United States |
| Bandera Family Health Care | San Antonio | Texas | 78249 | United States |
| D020969 |
| Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |