Research

Initiating new projects

Institutions and individual researchers wishing to use data and/or samples held by the National Register/Competence Network for Congenital Heart Defects or the infrastructure (e.g. for prospective studies) are cordially invited to submit a research proposal to the management office. Please use the template provided below (available in German language only) and send it to ubauer(at)kompetenznetz-ahf.de.

If you wish to find out beforehand if certain patient data or samples are available in sufficient quantities, please send us a short enquiry.
 
Decisions relating to joint studies, participation in collaborative projects and provision of samples for research projects are taken jointly by the management board, the steering committee of the Competence Network for Congenital Heart Defects and expert steering boards. Use of samples from the database, for example, is governed by a committee of representatives from the fields of cardiology, human genetics, fundamental research, patients, and ethics and medical law.

Specific decision-making processes have been laid down by the Competence Network steering committee and the management board of the register in respect of project proposals declaring the intention to use data, samples and/or the infrastructure or logistics of the Competence Network for Congenital Heart Defects.

Download

Document Date File Author
Sample enquiry form 20.01.2011 DOC / 291 KB KN AHF
Research proposal form 30.05.2016 DOC / 204 KB KN AHF e. V./NR e. V.

Rules governing cooperation

  • In principle, collaborative work in (and with) the competence network is possible provided that (i) studies use the database systems maintained by the competence network/register and (ii) biosamples are centrally administered by the competence network and stored in accordance with uniform standards (thereby permitting the ongoing use of scientific data and samples).
  • The competence network also supports single-centre studies provided the conditions enumerated above are met.
  • The rules set out by the steering committee regarding the collection and use of data/samples, as well as analysis of the findings, must be acknowledged in writing.
  • Collaborating institutions which bring large quantities of data and samples into the network are given a say in subsequent decisions on new proposals/research projects.

Rules governing the submission of proposals and the use of data and samples

  • Proposals must be submitted to the management board of the competence network using the following format: a. name of proposer, b. generally comprehensible summary, c. objectives/hypothesis, d. status of research, e. work plan and schedule, f. funding arrangement.
  • The decision-making process is outlined in the above diagram.
  •  In the event of competing proposals, the earlier date of receipt shall take precedence – or the competing proposers will be invited to collaborate.
  • The proposer receives the right of use for a defined study topic and for a limited period of time.
  • Brief progress reports are to be submitted to the steering committee every six months and must include information on adherence to the work plan and schedule.
  • On conclusion of the project, the data/samples will be made available to the network (for the ongoing use of scientific data and samples).