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About IMPORTANCE

Find out more about the IMPORTANCE Clinical Research Collaboration, its vision, aims and objectives.

Increasing numbers of patients receive home respiratory support for sleep disordered breathing (SDB) or chronic respiratory failure (CRF). This may be in the form of positive airway pressure (PAP) or home mechanical ventilation (HMV). The number of patients receiving PAP or HMV is currently unknown, and there is significant variability in patient selection, diagnosis, treatment initiation, follow-up and e-health implementation across Europe.

The ERS CRC IMPORTANCE envisions a future whereby PAP/HMV care is standardised, efficient, and accessible to all eligible patients

IMPORTANCE aims to:

  1. increase the knowledge of the burdens of SDB and CRF
  2. gain insight into current clinical practices in applying PAP/HMV therapy
  3. evaluate the use and effectiveness of new technologies for diagnose, treating, and monitoring these patients effectively both in the hospital and at home
  4. explore preferences of patients, caregivers, and other key stakeholders. To achieve those aims, three work packages were designed.
Work Package 1: International variations in disease burden and management
Work Package 1: International variations in disease burden and management

Work Package 1: International variations in disease burden and management

We are surveying patients, clinicians and home care providers to gather insights on care delivery and outcomes, and identifying existing local and national registries. Following legal requirements for data regulation, these data will be merged to provide retrospective insights into care delivery.

Work Package 2: Impact of PAP/HMV practices on patient outcomes
Work Package 2: Impact of PAP/HMV practices on patient outcomes

Work Package 2: Impact of PAP/HMV practices on patient outcomes

We are developing a prospective registry into which information about patients newly starting PAP or HMV will be entered. Data will be collected on patients’ medical history and reasons for starting PAP/HMV, details about their therapy and how they use it, their symptoms and quality of life and importance clinical outcomes, such as hospitalisation and death. Optional physiological details can be provided.

Work Package 3: Harmonisation and guidelines
Work Package 3: Harmonisation and guidelines

Work Package 3: Harmonisation and guidelines

With retrospective and prospective data, we will develop data-driven, internationally harmonised guidelines and educational material to ensure that all stakeholders have the knowledge and tools needed to deliver optimal and standardised patient care.

This research is supported by:

The European Respiratory Society