1. Where is the data we enter physically located?
The web-based iCaRe2 is housed in the University of Nebraska Medical Center (UNMC) state-of-the-art data center.
2. Should we enter only patients with cancer?
No. The iCaRe2 allows clinicians and researchers to collect data on cancer patients as well as on individuals at high risk of developing cancer (unaffected individuals).
3. Could you provide information about HIPAA, IRB, and sharing data?
The iCaRe2 operates under an IRB-approved protocol for data collection, storage, and sharing at UNMC. Written consent from participants for research will need to be obtained. Each participating center will need to have all of the research activities and consent forms approved by their own Institutional Review Boards. As a participating center you will have access to templates of an IRB application and patient informed consent form.
4. If only the individual groups can access their own data, how do we get an overview to see how the joint datasets might be used for collaborative projects?
Levels of access for the investigators and collaborators depend on the agreement between the collaborators. Each center can decide that its data is not accessible for anyone else, or all data accessible to all collaborators, or only part of the data should be accessible and everything else is secured. In either case, you need to make this decision.
5. How would you sort out authorship for future ‘joint’ publications?
The Principal Investigator (PI) will discuss authorship with each center at the time of the initiation of a collaborative study. The PI will designate the first, second, and last author of each abstract and manuscript. The sequence of co-authorship on each abstract/manuscript will be determined by the PI. Proper acknowledgement of the iCaRe2 resource and individual cancer-specific registry should be made in publications.
6. Is there a fee for a center to participate in the iCaRe2?
There is no fee to use the iCaRe2. However, if and when investigators are submitting a new grant application with a provision for the use of the iCaRe2, it would be reasonable to secure a portion of funding for data entry and support/maintenance of the system. Representatives from the UNMC Fred & Pamela Buffett Cancer Center are available to assist investigators with writing the portion of grant applications related to the utilization of the iCaRe2 for collaborative studies.
7. How to request data and/or specimens from the iCaRe2?
To request data and specimens please follow the steps outlined in this workflow.