Making registry data available for everyone

Patients contribute their time to participating in research, and contribute their data to a registry because they want to see the data used to improve clinical care and to bring forward advances in medical research. The EMBARC registry has therefore been developed with the principle that data should be a freely available as possible, and that the results of the study should be disseminated as widely as possible in order to have the greatest possible impact on health and patient care.

This page details the process for accessing the EMBARC registry data for analysis. Access to the data is open to anyone with a valid research question subject to the conditions below.

The process of applying for data access is simple. The data access application form can be downloaded here:    Download Data_Request_Form V4 20170504

Once completed please send the form to the co-ordinator at info@bronchiectasis.eu to start the approval process. The approval process is summarised below

Access

Access to anonymised data will be possible for all investigators and other stakeholders throughout the study through the HIC “Safe Haven” platform, a virtual desktop which allows secure data access and data analysis but prevents copying or alteration of data, thereby ensuring complete data security. Please note that active Investigators and other stakeholders have unrestricted access to their own data which you can download directly through the EMBARC case report form software

Requests to analyse the database as a whole are managed by submission of a study proposal to the EMBARC scientific committee using the form above. 

Governance processes surrounding data management and access are fully compliant with the Data Protection Act 1998 and the Data Protection Directive 95/46/EC of the European Parliament and of the Council (1995).

Authorship policy for scientific publication

The EMBARC study group will follow the International Committee of Medical Journal Editors (ICMJE) recommendations regarding authorship. These are shown below for reference.

An author must take responsibility for at least one component of the work, should be able to identify who is responsible for each other component, and should ideally be confident in their co-authors’ ability and integrity. Authorship credit should be based on 1) substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; 2) drafting the article or revising it critically for important intellectual content; and 3) final approval of the version to be published. Authors should meet conditions 1, 2, and 3.

When a large, multicenter group has conducted the work, the group should identify the individuals who accept direct responsibility for the manuscript. These individuals should fully meet the criteria for authorship/contributorship defined above, and editors will ask these individuals to complete journal-specific author and conflict-of-interest disclosure forms. When submitting a manuscript authored by a group, the corresponding author should clearly indicate the preferred citation and identify all individual authors as well as the group name. Journals generally list other members of the group in the Acknowledgments. The NLM indexes the group name and the names of individuals the group has identified as being directly responsible for the manuscript; it also lists the names of collaborators if they are listed in Acknowledgments.

  • Acquisition of funding, collection of data, or general supervision of the research group alone does not constitute authorship.
  • All persons designated as authors should qualify for authorship, and all those who qualify should be listed.
  • Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

 All questions regarding publication or authorship will be addressed by the scientific committee, who will have the final authority over these decisions.