Instructions
From the Proposal to the Start of the Research
Institutions and researchers who would like to use data and samples from the Competence Network for Congenital Heart Defects and the National Register for Congenital Heart Defects, or who would like to use our infrastructure (e.g. databases for prospective studies) are cordially invited to submit a research proposal to the Management Office.
The decisions regarding the joint performance of studies, participation in network projects, as well as providing samples for research projects, is made by the Data Access Committee after review and discussion of the reviewer board. The Data Access Committee comprises the National Register’s Management Board and the Steering Committee of the Competence Network for Congenital Heart Defects. Get an overview of the decision processes at the Competence Network for Congenital Heart Defects here.
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1
Research Proposal
Simply submit your research proposal to our Management Office online by using the form below.
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2
Checking the Availability of Data and Samples
The National Register’s Study Management checks the availability of the data and samples required for your project.
Duration: approx. 2 weeks.
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3
Review of Your Research Proposal
The Management Office forwards your proposal to the Data Access Committee, Review Board, as well as to sample collecting institutions in the case that biosamples are used.
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3a
Opinion of the Review Board
Your application is reviewed and evaluated by the Review Board. The assessment of the Review Board is forwarded to the Data Access Committee.
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3b
Opinion of the Sample Collecting Institutions
The sample collecting institutions/departments inform the Data Access Committee of their approval regarding the use of samples collected by them within the scope your research project.
Total duration of step 3: 4 weeks.
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4
Release of Samples
Based on the Review Board’s recommendation and the approval of the sample collecting institutions, the Data Access Committee decides about releasing the data and samples required for your project.
Duration: 2 weeks.
You can start planning your research project in concrete terms. Our Study Management and our Management Office will continue to support you during your research project.
Sample collecting institutions
Your Research Proposal
Your Research Inquiry
If you would like to know whether a sufficient quantity of patient data or samples is available prior to submitting a proposal we kindly ask you to send us a brief inquiry.
Using Your Own Data and Samples for Research
You would like to use your own samples and data for research? Doing this with the Competence Network for Congenital Heart Defects requires you to file a notice for the use of own samples and data in order to enable the Central Sample Management to trace back the biosamples used.
Your contact persons
© Wolfram Scheible für Nationales Register
Dr. med. Ulrike Bauer
© Lotte Barthelmes
PD Dr. rer. nat. Thomas Pickardt
Kompetenznetz Angeborene Herzfehler e. V. | Netzwerkzentrale
13353 Berlin
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