One of the aims of the Dutch CardioVascular Alliance (DCVA) is to strengthen cardiovascular research by increasing accessibility and reusability of existing and new data. For this, the DCVA provides insight in the available elements, tools and services that can be used for these purposes and are offered by one of the Dutch CardioVascular Alliance partners and/or Health RI. This will allow scientists to fully focus on excellent research to improve patient care. This guide on research infrastructure can help you find the right services for composing your research proposal and executing your project.
- Design and execution of clinical trials (industry or investigator initiated).
- Access to network for cardiovascular research and monitoring.
- Site monitoring based on ICH-GCP guidelines and local regulatory requirements.
More information:
- WCN
- www.wcn.life
- +31 (0)30 2239937
- secretariaat@wcn.life
Development and/or assessment of a data management plan (DMP) to structure the process of data collection, organization, storage and access according to the FAIR-principles.
Note: follow the guidelines of your institution or funder in setting up a data management plan.
More information:
- Netherlands Heart Institute, Durrer Center
- https://www.durrercenter.nl/datamanagement/#DMP
- +31 (0)20 5666502 or +31 (0)88 2333600
- info@durrercenter.nl
- Health-RI
- Dutch Heart Foundation
- ZonMw
Development and implementation of well-defined data access conditions so that data can easily be accessed and/or downloaded.
More information:
- Netherlands Heart Institute, Durrer Center
- https://www.durrercenter.nl
- +31 (0)20 5666502 or +31 (0)88 2333600
- info@durrercenter.nl
- https://www.durrercenter.nl
- Health-RI
Tooling for data processing and analysis.
More information:
Publication of data according to FAIR principles to make reuse of data possible. Follow the guidelines of your institution or funder (e.g.Heart Foundation and ZonMw have an Open Access Policy).
More information:
Data collection and sustainable storage (clinical data, genetic data, imagery) including the technical infrastructure.
For clinical data capture REDCap and Castor are solutions enabling researchers to build and manage online databases and surveys. iCRF generator can be used to create interoperable CRF's based on currently available codebooks.
XNAT is a service for archiving, viewing and analyzing clinical imaging data.
Data intensive biomedical research can use Galaxy for analyses.
More information:
- Netherlands Heart Institute, Durrer Center
- https://www.durrercenter.nl/datamanagement
- +31 (0)20 5666502 or +31 (0)88 2333600
- info@durrercenter.nl
- Health-RI
Metadata storage in international (cardiovascular) directories to increase the findability of your data, e.g. Molgenis.
More information:
Best practices and advice on ethical and legal issues.
More information:
Participation of cardiovascular healthcare professionals in research projects, policy and quality of health care.
More information:
- NVVC
- www.nvvc.nl
- +31 (0)30 2345000
- bureau@nvvc.nl
Set up and management of cardiovascular patient registries for research and outcome measurements.
More information:
- NHR
- https://nederlandsehartregistratie.nl
- +31 (0)88 2200900
- info@nederlandsehartregistratie.nl
Participation of cardiovascular patients in research projects, policy and quality of health care.
More information:
- Harteraad
- https://harteraad.nl
- +31 (0)88 1111600
- info@harteraad.nl
Registration of preclinicaltrials aims to provide a comprehensive listing of preclinical animal study protocols. Preferably the trials registered at inception in order to increase transparency, help avoid duplication, and reduce the risk of reporting bias by enabling comparison of the completed study with what was planned in the protocol.
More information:
- Netherlands Heart Institute
- https://preclinicaltrials.eu
- +31 (0)88 2333600
- info@preclinicaltrials.eu
Project management including financial administration of (consortium-) projects.
More information:
- Netherlands Heart Institute
- https://www.heart-institute.nl
- +31 (0)88 2333600
- info@heart-institute.nl
- https://www.heart-institute.nl
- WCN
- www.wcn.life
- +31 (0)30 2239937
- secretariaat@wcn.life
For reliable and high-quality data about cardiovascular disease and related care in the Netherlands: please visit 'Hart & Vaatcijfers', a collaboration between the Heart Foundation and the Dutch Heart Registration (NHR).
- Hart & Vaatcijfers
- Dutch Heart Registration (NHR)
- www.nhr.nl
- +31 (0)88 2200 900
- info@nhr.nl
- Dutch Heart Foundation
Contact
- DCVA – Infrastructure working group
- data-infrastructure@dcvalliance.nl