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| Name | Class |
|---|---|
| University Hospital, Gentofte, Copenhagen | OTHER |
| Odense University Hospital | OTHER |
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Idiopathic pulmonary fibrosis (IPF) is a progressive lung disease with a high mortality. Health-related quality of life (HRQL) is impaired in patients with IPF. Little is known about the properties of recently developed HRQL questionnaires and about the longitudinal changes in HRQL, including factors with an impact on HRQL. Comorbidities have an impact on patients with IPF, but reports differ in incidence and prevalence. The impact of comorbidities on HRQL and disease progression has only been studied sparsely. Also, the association between biomarkers and disease progression need to be examined further.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with IPF |
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| Measure | Description | Time Frame |
|---|---|---|
| Health-related quality of life | Change in St. George's Respiratory Questionnaire | Baseline, 6 months, 12 months, 24 months, 36 months |
| Health-related quality of life | Change in St. George's Respiratory Questionnaire, IPF-specific | Baseline, 2 weeks, 6 months, 12 months, 24 months, 36 months |
| Health-related quality of life | Changes in King's Brief Interstitial Lung Disease questionnaire | Baseline, 2 weeks, 6 months, 12 months, 24 months, 36 months |
| Number and type of comorbidities | Prevalence of comorbidities at baseline | Baseline |
| Number and type of comorbidities | Incidence of new comorbidities after 6 months, 12 months, 24 months and 36 months | Change/incidence at 6 months, 12 months, 24 months and 36 months |
| Measure | Description | Time Frame |
|---|---|---|
| Lung function tests | Change in forced vital capacity | Baseline, 6 months, 12 months, 24 months, 36 months |
| Lung function tests | Change in diffusion capacity for carbon monoxide |
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Inclusion Criteria:
Exclusion Criteria:
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Incident and prevalent patients with IPF in Denmark.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Aarhus University Hosptial | Aarhus C | Denmark | ||||
| Gentofte Hospital |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 37343745 | Derived | Hansen AH, Breisnes HW, Prior TS, Hilberg O, Rasmussen DGK, Genovese F, Lukassen MV, Svensson B, Langholm LL, Manon-Jensen T, Karsdal MA, Leeming DJ, Bendstrup E, Sand JMB. A serologically assessed neo-epitope biomarker of cellular fibronectin degradation is related to pulmonary fibrosis. Clin Biochem. 2023 Aug;118:110599. doi: 10.1016/j.clinbiochem.2023.110599. Epub 2023 Jun 19. | |
| 32316976 |
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| ID | Term |
|---|---|
| D054990 | Idiopathic Pulmonary Fibrosis |
| ID | Term |
|---|---|
| D011658 | Pulmonary Fibrosis |
| D017563 | Lung Diseases, Interstitial |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
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Serum and EDTA-plasma is collected from all patients at 0, 6, 12, 24 and 36 months
| Baseline, 6 months, 12 months, 24 months, 36 months |
| 6-minute walk test | Change in 6-minute walk test | Baseline, 6 months, 12 months, 24 months, 36 months |
| Progression in serum/plasma biomarker levels | Increase or decrease in serum/plasma biomarker levels | Baseline, 6 months, 12 months, 24 months, 36 months |
| Health-related quality of life | Change in Short Form 36 | Baseline, 6 months, 12 months, 24 months, 36 months |
| Health-related quality of life | Changes in University of California San Diego Shortness Of Breath Questionnaire | Baseline, 6 months, 12 months, 24 months, 36 months |
| Disease progression | Change in interstitial changes on high resolution CT-scan (HRCT) | Baseline, 12 months, 24 months, 36 months |
| Disease progression | Changes in number of acute exacerbations | Baseline, 6 months, 12 months, 24 months, 36 months |
| Disease progression | Changes in use of supplementary oxygen | Baseline, 6 months, 12 months, 24 months, 36 months |
| Hellerup |
| Denmark |
| Odense University Hospital | Odense | Denmark |
| Derived |
| Prior TS, Hoyer N, Hilberg O, Shaker SB, Davidsen JR, Bendstrup E. Responsiveness and minimal clinically important difference of SGRQ-I and K-BILD in idiopathic pulmonary fibrosis. Respir Res. 2020 Apr 21;21(1):91. doi: 10.1186/s12931-020-01359-3. |
| 31856786 | Derived | Prior TS, Hilberg O, Shaker SB, Davidsen JR, Hoyer N, Birring SS, Bendstrup E. Validation of the King's Brief Interstitial Lung Disease questionnaire in Idiopathic Pulmonary Fibrosis. BMC Pulm Med. 2019 Dec 19;19(1):255. doi: 10.1186/s12890-019-1018-0. |
| 31462235 | Derived | Prior TS, Hoyer N, Shaker SB, Davidsen JR, Yorke J, Hilberg O, Bendstrup E. Validation of the IPF-specific version of St. George's Respiratory Questionnaire. Respir Res. 2019 Aug 28;20(1):199. doi: 10.1186/s12931-019-1169-9. |