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| ID | Type | Description | Link |
|---|---|---|---|
| 1R01HL161164-01A1 | U.S. NIH Grant/Contract | View source | |
| KAZMER22A0 | Other Grant/Funding Number | Cystic Fibrosis Foundation |
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| Name | Class |
|---|---|
| Cystic Fibrosis Foundation | OTHER |
| National Heart, Lung, and Blood Institute (NHLBI) | NIH |
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This project will determine the health impact of parenthood on people with cystic fibrosis (CF). The study team will use retrospective data to provide relatively immediate evidence on parenthood's effect on pulmonary health.
This co-funded study sponsored by the National Institutes of Health and the CF Foundation (CFF) will seek to determine the health impact of parenthood on people with CF in the era of CF transmembrane conductance regulator (CFTR) modulators. To provide relatively immediate evidence on parenthood's effect on pulmonary health and the influence of the introduction and use of all available CFTR modulators, in Aim 1 the study team will assess changes in pre- vs. intra-parenthood percent predicted forced expiratory volume in 1 second (ppFEV1) in a retrospective longitudinal cohort study linking CFF patient registry (CFFPR) data with cross-sectional surveys collected from 249 new parents attending participating United States CF centers between 2012-2022. The study team will identify predictors and timing of lung function loss using 747 non-parents from participating centers as a comparison group and examine the impact of CFTR modulators on parental health.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Parents | Individuals diagnosed with cystic fibrosis who became a first-time parent between January 1, 2012 and December 31, 2022. |
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| Non-parents | Individuals diagnosed with cystic fibrosis who have never been a parent. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Parental Status | Other | The aim of the study is to assess the impact parenthood has on health outcomes. |
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| Measure | Description | Time Frame |
|---|---|---|
| FEV1 | Rate of decline of ppFEV1 as reported in the CFFPR | 2012-2022 |
| Measure | Description | Time Frame |
|---|---|---|
| Rate of pulmonary exacerbations | Rate of pulmonary exacerbations as reported in the CFFPR | 2012-2022 |
| Rate of hospitalizations | Rate of hospitalizations as reported in the CFFPR |
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Inclusion Criteria:
Exclusion Criteria:
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Individuals with cystic fibrosis who are participants in the Cystic Fibrosis Foundation's Patient Registry.
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| Name | Affiliation | Role |
|---|---|---|
| Traci M Kazmerski, MD, MS | University of Pittsburgh | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| National Jewish Health | Denver | Colorado | 80206 | United States | ||
| Johns Hopkins University |
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| ID | Term |
|---|---|
| D003550 | Cystic Fibrosis |
| ID | Term |
|---|---|
| D010182 | Pancreatic Diseases |
| D004066 | Digestive System Diseases |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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| 2012-2022 |
| Clinic visit attendance | Clinic visit attendance as reported in the CFFPR | 2012-2022 |
| BMI | BMI as reported in the CFFPR | 2012-2022 |
| Medication Use | Medication use as reported in the CFFPR | 2012-2022 |
| CFRD Control | HbgA1c as reported in the CFFPR | 2012-2022 |
| Microbiologic profile | Presence of specific types of bacteria, mycobacteria, fungus in cultures as reported in the CFFPR | 2012-2022 |
| Baltimore |
| Maryland |
| 21218 |
| United States |
| Massachusetts General Hospital | Boston | Massachusetts | 02114 | United States |
| University of Minnesota | Minneapolis | Minnesota | 55455 | United States |
| University of North Carolina | Chapel Hill | North Carolina | 27599 | United States |
| UPMC | Pittsburgh | Pennsylvania | 15213 | United States |
| University of Texas-Southwestern | Dallas | Texas | 75390 | United States |
| University of Washington | Seattle | Washington | 98195 | United States |
| D030342 |
| Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007232 | Infant, Newborn, Diseases |