An International Patient-led Registry in Fibrotic Interstitial Lung Diseases Using eHealth Technology

NCT ID: NCT04304898

Last Updated: 2024-03-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

700 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-05-01

Study Completion Date

2026-07-31

Brief Summary

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The I-FILE study is a prospective multicenter, multinational observational study where the feasibility of a patient-led registry using home monitoring in patients with pulmonary fibrosis will be evaluated. The aim of the study is to gain more insights in disease behavior in patients with pulmonary fibrosis, so in future patients with progressive disease can be better identified.

Detailed Description

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Nowadays, identifying disease progression will have direct treatment implications in patients with fibrotic Interstitial lung diseases (F-ILDs). eHealth could be a possible solution for close monitoring and detecting disease progression, at a low burden for patients and healthcare providers. The main aim of the I-FILE study will be to evaluate feasibility of a patient-led registry using home spirometry to monitor disease progression in patients with F-ILD. The secondary aim will be to better validate existing health-related quality of life questionnaires to assess the impact of disease and treatment in these patients.

In total 500 patients with newly diagnosed F-ILD will be included. Patients will perform daily home spirometry in the first three months followed by once weekly measurements with a follow up period of 2 years. In addition, patient-reported outcomes (PROMs) will be completed online every 6 months. Results are encrypted and directly sent to a secured server through the online I-FILE application.

Conditions

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Pulmonary Fibrosis

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Single Group Assignment

Intervention group without a control group

Home spirometry

Intervention Type OTHER

* Patients will perform daily home spirometry for three months with a Bluetooth-enabled validated, CE-marked home spirometer (Spiro bank Smart, MIR, Italy). Subsequently, patients will perform weekly home spirometry for two years in total. During this period, patients will be asked to perform three measurements each week on the same day.
* Hospital-based spirometry will be performed according to international guidelines.
* Patients will complete patient-reported outcomes (PROMs) online in the secured application every six months.

Interventions

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Home spirometry

* Patients will perform daily home spirometry for three months with a Bluetooth-enabled validated, CE-marked home spirometer (Spiro bank Smart, MIR, Italy). Subsequently, patients will perform weekly home spirometry for two years in total. During this period, patients will be asked to perform three measurements each week on the same day.
* Hospital-based spirometry will be performed according to international guidelines.
* Patients will complete patient-reported outcomes (PROMs) online in the secured application every six months.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

Newly diagnosed patients with F-ILD according to the ATS/ERS criteria by a multidisciplinary ILD team :

* MDT diagnosis ≤ 6 months before inclusion
* Treatment for F-ILD ≤ than 1 month

Exclusion Criteria

* Not able to speak, read or write in the native language of the country where the patient is included
* Not able to comply to the study protocol, according to the judgement of the investigator and/or patient
* No access to internet
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Erasmus Medical Center

OTHER

Sponsor Role lead

Responsible Party

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Marlies Wijsenbeek

Principal investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Marlies Wijsenbeek, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Erasmus Medical Center

Wim Wuyts, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Universitair Ziekenhuis Leuven

Anna-Maria Hoffmann-Vold, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Oslo University Hospital

Michael Kreuter, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Interdisciplinary Center for Sarcoidosis, Thoraxklinik, University Hospital Heidelberg

Philip Molyneaux, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Royal Brompton Hospital, Guys and St Thomas' Hospital NHS Foundation Trust.

Vincent Cottin, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Service de pneumologie, hôpital Louis Pradel, Hospices Civils de Lyon

Katarina Antoniou

Role: PRINCIPAL_INVESTIGATOR

Laboratory of Molecular and Cellular Pneumonology, Respiratory Medicine Department, School of Medicine, University of Crete, Heraklion, Greece

Locations

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Erasmus MC

Rotterdam, South Holland, Netherlands

Site Status RECRUITING

Erasmus MC

Rotterdam, , Netherlands

Site Status RECRUITING

Countries

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Netherlands

Central Contacts

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Marlies Wijsenbeek, MD PhD

Role: CONTACT

+31107030323

Facility Contacts

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Marlies Wijsenbeek, MD PhD

Role: primary

+31107030323

M.S. Wijsenbeek, dr

Role: primary

References

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Nakshbandi G, Moor CC, Antoniou K, Cottin V, Hoffmann-Vold AM, Koemans EA, Kreuter M, Molyneaux PL, Wuyts WA, Wijsenbeek MS. Study protocol of an international patient-led registry in patients with pulmonary fibrosis using online home monitoring: I-FILE. BMC Pulm Med. 2023 Feb 2;23(1):51. doi: 10.1186/s12890-023-02336-4.

Reference Type DERIVED
PMID: 36732734 (View on PubMed)

Other Identifiers

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MEC-2020-0029

Identifier Type: -

Identifier Source: org_study_id

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