HMV-NL

The Dutch Home Mechanical Ventilation data registry

Description

The Dutch Home Mechanical Ventilation data registry is a registry of patient characteristics and treatment-related data and outcomes of all patients on home mechanical ventilation being treated by the home mechanical ventilation centers in the Netherlands. This national HMV-NL databank, focusing on patients initiated on home mechanical ventilation (HMV) in the Netherlands, has provided the foundation for the international CRC IMPORTANCE databank. This broader initiative extends to patients with sleep-disordered breathing (SDB) and chronic respiratory failure (CRF) who require long-term respiratory support, i.e. HMV, positive airway pressure (PAP), or home nasal high-flow therapy (nHFT) across multiple countries. Learn more about the CRC IMPORTANCE Databank → https://doi.org/10.34760/686e3d46f1be3

General Design

Type
Cohort study
Cohort type
Clinical cohort
Data collection type
Retrospective, Prospective
Design
Longitudinal
Design description
Longitudinal cohort started at the moment the patient is started on home mechanical ventilation and continues to final follow-up when the patients stops chronic home ventilation
Start/End data collection
1980 (ongoing)
PID
https://doi.org/10.34760/6526703c5003d

Population

Countries
Netherlands (the)
Regions
Limburg, Zeeland, Zuid-Holland, Noord-Holland, Noord-Brabant, Flevoland, Utrecht, Gelderland, Overijssel, Drenthe, Friesland, Groningen
Number of participants
4000
Population age groups
Newborn (0-1 months), Infants and toddlers (2-23 months), Child (2-12 years), Adolescent (13-17 years), Young adult (18-24 years), Adult (25-44 years), Middle-aged (45-64 years), Aged (65-79 years), Aged (80+ years)
Main medical condition
  • VI Diseases of the nervous system
  • IX Diseases of the circulatory system
  • X Diseases of the respiratory system
  • XIII Diseases of the musculoskeletal system and connective tissue
  • XVII Congenital malformations, deformations and chromosomal abnormalities
Other inclusion criteria
Patients that start on home mechanical ventilation

Organisations

Lead organisations
Additional organisations

Contributors

Subpopulations

List of subpopulations for this resource
No results for current selection

Collection events

List of collection events defined for this resource
No results for current selection

Access conditions

For scientific purposes: Anonymized or pseudo-anonymized data can be provided according to the WGBO, AVG and "Wet bescherming persoonsgegevens" on request once: 1) the request accompanied by a specific research protocol for the research to be conducted is approved by a central or local toetsingscommissie; 2) this approval is forwarded and approved by to the "beheerder" 3) the research committee of the HMV data registry consents; 4) necessary contracts are signed. For non-scientific purposes: Data can only be provided after consent from the board of directors of the UMCG. IT has to be clear what the purpose for data collection is, how data are used and stored, and this has to be in line with the regelement, the PIF and informed consent. No property rights are transferred. The rights of participants are well secured. The receiving party cannot transfer the data to others.
Data access conditions
health or medical or biomedical research
Data use conditions
  • research specific restrictions
  • collaboration required
  • ethics approval required
  • project specific restriction
  • clinical care use
Release type
Closed dataset

Funding & Acknowledgements

Funding
No additional funding now

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