Malin B, Karp D, Scheuermann HR: technical and political approaches to balancing patient data protection with data exchange in clinical and translational research. J Invest Med. 2010, 58 : 11-18. 5. The elements of the above list are shared with researchers outside the CHS Coordination Centre. Access to the data is made available to CHS researchers, staff or scientific research following the following procedures. Toll-free: 1-800-962-4238 .pensco.com checklist for the distribution of beneficiaries and inherited from this checklist is designed for you (beneficiaries) policies and information for processing requests for sharing recipients and… Peng RD, Dominici F, Zeger SL: reproducible epidemiological research. At Epidemiology J. 2006, 163: 783-789. 10.1093/aje/kwj093. Spertus JA: The double-edged sword of open access to research data.
Circ Cardiovasc results of agony. 2012, 5: 143-144. 10.1161/CIRCOUTCOMES.112.965814. G`tzsche PC: strengthening and opening up health research by exchanging raw data. Circ Cardiovasc results of agony. 2012, 5: 236-237. 10.1161/CIRCOUTCOMES.112.965277. Until December 2009, CHS investigators had full access to study data.
Starting in December 2009, CHS investigators will be required to follow the following investigative procedures for data collection. Staff members must receive a CHS reviewer who is ready to sponsor their research and access to the data needed for a given research project, after the project has been approved by the study and a data and materials sharing agreement (DMDA) requires an IRB audit by their institution, is only allowed to access it. Ancillary studies are subject to steering committee approval and, as soon as new data have been collected, they must be sent to the coordination centre to be collected with other CHS data. To obtain biospecimens or scans, a researcher in further studies must enter into a data and material distribution agreement (DMDA) that requires an IRB verification of their institution. There are many possibilities for using existing data: meta-analyses, applications of innovative statistical methods, replication, new new analyses, inter-study comparisons and sample size estimates for new studies. The benefits of data exchange for the research community are regularly discussed in the literature [1-6], yet open data sharing at the participant level is not without potential pitfalls. First, the interests of participants who voluntarily make their data available must be taken into account, along with the interests of researchers. Participants voluntarily make their time and data available for many reasons [7, 8] and respect for the privacy of participants is a major concern [9, 10].
Researchers devote considerable effort to the design, implementation and analysis of studies and are rightly entitled to a protected period with the data.