ACCESSING EMBARC DATA & SAMPLES

Interested in utilising EMBARC resources for your research?

The EMBARC registry and EMBARC-BRIDGE biobank are valuable resources developed to support high-quality, collaborative research into bronchiectasis. As such, we offer a selection of samples to support research.

If you are interested in accessing these resources for an upcoming research project, please review the available options below and complete the relevant registration form.

If you have any questions or require assistance, please contact us.

Available Resources:

Clinical Data from the EMBARC Registry

The EMBARC registry now holds comprehensive clinical data for >20,000 individuals with bronchiectasis from 300 research sites across 27 EU and non-EU countries, including baseline data and data obtained from annual follow-up.

A list of the available clinical data collected as part of the EMBARC registry can be found here.

Biological Samples from EMBARC-BRIDGE

EMBARC-BRIDGE holds clinical data and biological samples for >1,500 individuals with bronchiectasis across Europe.

EMBARC-BRIDGE collects the comprehensive clinical data collected within the EMBARC Registry as well as biological samples at recruitment with annual (± 3 months) follow-up data collected for up to 3 years following initial recruitment – 4 study visits in total.

An overview of the biological samples collected as part of EMBARC-BRIDGE is shown below.

Biological Datasets Generated from EMBARC-BRIDGE

Various large scale, biological datasets have been generated from the biological samples collected as part of EMBARC-BRIDGE. 

A list of the available biological datasets can be found here. 

NCFBE Bacterial Isolates

EMBARC also collects bacterial isolates from those with non-cystic fibrosis bronchiectasis, with associated clinical metadata and whole genome sequencing (WGS) data also available. The collection includes >20,000 organisms, with a predominance of Pseudomonas aeruginosa.

Pathogens

Number of Isolates

Clinical MetaData & WGS

P. aeruginosa

>10,000

Comprehensive and some WGS

H. influenzae

500

Comprehensive and some WGS

Others- >50 organisms

>1000

Comprehensive

How to Register:

To request access to EMBARC data or biological samples, please complete the appropriate form via the links below.

Your submission will be reviewed, and access will be granted based on availability and eligibility criteria.

All requests for biological samples, data or datasets from the European Bronchiectasis Registry must be submitted with these forms. Samples and data will usually be provided free of charge to those who contribute to the European Bronchiectasis registry. Other requests may be subject to a charge depending on the nature and source of the request. All requests for samples and data will be reviewed by the Scientific Committee and the decision approved by the executive group of the bronchiectasis registry. The decision of the executive group will be final. The policy of the European bronchiectasis registry is as follows:  
  • All approved scientific projects should be published in peer-reviewed journals. If this is not possible, the approved project should be published as an abstract for a conference, preferably the annual ERS conference
  • The European Bronchiectasis Registry should be acknowledged in any publication
  • A copy of any publication must be forwarded to the BRIDGE Project Manager (k.l.y.robertson@dundee.ac.uk)
  • The scientific projects will be published on the webpage of the registry as a link to the publication

Please note that in case of a successful application, you will be asked to sign a declaration “Statement on the use of data” that you will use the data only for the purposes mentioned in this application form and you will be held responsible if these data will be transferred to another person or will be used for any other purpose(s).   

If you have any questions or require assistance, please contact us.