A number of research centers (the "Personalized NSAID Therapeutics Consortium", PENTACON) are collecting data sets in the area of NSAID therapeutics, with a focus on how the use of these important medications can be optimized. PENTACON’s aim is to combine data from multiple sources (humans and model organisms) using a variety of experimental and analytic approaches to understand the mechanism of action of these drugs. A particular focus is determining how to select who should receive them and at what dose. There is an interest among these groups in sharing and combining their data, in order to answer these questions. Sharing these data could be achieved simply by trading around data files, but there is an opportunity to put the data into a single location and to link them more effectively to their corresponding genotypes, and to each other. In addition, this consortium is committed to data sharing upon publication, an activity that requires planning to make dissemination easy, timely and effective. Scientific curators are trained to accept, integrate and curate the data into a form that is compatible with dissemination to other scientists, including those within the consortium and those in the general biomedical research community. This document outlines the agreements we have reached for data sharing.
Memorandum of Understanding
1. PENTACON will allocate personnel resources to work with each center to accept that center's relevant data, and curate the data using standards for phenotype files, similar to those currently employed on PharmGKB (e.g. sample files at http://www.pharmgkb.org/search/browse.action?browseKey=phenotypeDatasets).
2. Consortium members will designate points of contact for PENTACON staff to work with on each individual data set. These contacts should be very familiar with the details of the data sets, or have easy access to those who do.
3. PENTACON staff will get the data into standard data templates, when available and will work with each center to carefully document the details and meaning of each measurement (a critical activity for resolving subtle differences in the data sets). The result will be a data file that can be shared on the project intranet, and moved to the public internet upon publication. Curation of the data is an iterative process. Participating centers and PENTACON will perform several iterations of curation as the scientific questions become refined and the request for specific data increases. (The preview/intranet site is password protected and will be accessible only to consortium members.)
4. When relevant, PENTACON staff will also work with the centers to prepare human genotyping data.
5. The phenotype and genotype submissions to PENTACON will remain on the preview site while the consortium members work to understand it.
6. Consortium members are free to write papers based on their own data before, during and after the activities associated with this memorandum and consortium.
7. Consortium members may not write papers based on the data of others, except with explicit permission of those who collected the data. In general, consortium members will announce their intention to write a paper based upon some or all of the data, in order to maintain transparency and to allow other interested parties to potentially join these efforts.
8. Consortium members with access to the data agree that viewing these data is associated with responsibility for not publishing or disclosing it without approval of the group, but only can be used as a basis for conversation and potential collaboration with the originators.
9. When a paper is published based on all or some of the aggregated data set, all of the data on which the paper is based will be transferred to the PENTACON "public" site, simultaneously with publication. “All” is defined as the relevant data required for third party users to replicate the analysis, and therefore may include data that was explicitly considered during analysis, but did not contribute to the final “solution.” The expectation is that all data from papers published by all consortium members will ultimately end up on the public site. Data that are never published should end up on the public site once the analysis has been complete, in order to allow others to examine and analyze the data.
10. With publication and release of the data on the public site, PENTACON will engage in appropriate dissemination, announcements, and emphasis of the availability of this exciting data set to the community. Any data that are not included in the paper will not be transferred (unless specifically approved by the consortium).
Draft: Operating rules overview— data sharing
Work in progress—documents