Data Request

Attachment A Park-Reeves Syringomyelia Research ConsortiumPublication and Presentation Policy A. GOALS To encourage high quality publications and presentations in a timely fashion. To encourage broad participation by Park-Reeves Syringomyelia Research Consortium (PRSRC )Investigators in publications and presentations. To encourage multidisciplinary and creative use of the PRSRC data and resources. To ensure appropriate recognition of PRSRC investigators. B. SCOPE OF THE GUIDELINES This policy covers papers, abstracts, and presentations that involve unpublished data collected as a part of the PRSRC. These policies will remain in force for the duration of data analysis by the PRSRC Publication committee. C. PRSRC PUBLICATION REVIEW The PRSRC publication committee will have overall responsibility for publications from PRSRC. D. TYPES OF REPORTS These guidelines deal with 5 different types of reports. Main papers: Primary hypotheses and outcomes to be presented and published by the whole Consortium.Other study publications: May be undertaken by smaller groups for the PRSRC with all participants at the end of the paper.Abstracts submitted to national or international meetings. Presentations made to national or international meetings.Single Center Studies: Any given center can take their subset of data and study it, present it, and/or publish it. As a courtesy, investigators are requested to inform the PRSRC publication committee. E. AUTHORSHIP AND ACKNOWLEDGEMENTS Authors must participate in the writing of the paper in accordance with the International Committee of Medical Journal Editors guidelines (N Engl J Med1991; 324:424-8). First authors are expected to delete names from the final list of authors if those individuals have not participated in the writing and/or analysis of the paper in accordance with those guidelines. All PRSRC papers and abstracts should include either “PRSRC Investigators” or “for the Park-Reeves Syringomyelia Research Consortium” in the authorship line. All PRSRC papers should include an “Acknowledgements” section that lists the PRSRC investigators, the advisory committee, and principle staff at clinical sites.Authorship of main papers: Authorship of main papers may include investigators and research staff at relevant clinical sites. In general, these authors should be those who have made the most substantial contribution to the study. The publication committee will recommend the composition of authorship for the main papers and may make exceptions to these guidelines. Authorship of other papers: Where feasible and appropriate, the PRSRC publication committee will work with the investigator proposing the analysis and publication to complete the analysis and manuscript using PRSRC data.First authorship of PRSRC papers: First authors of main papers will be PRSRC investigators. For other PRSRC papers and abstracts, PRSRC investigators will also receive priority and fellows and other researchers may only serve as first authors on other PRSRC papers and abstracts if 1) the opportunity of first authorship on a project has been offered to all PRSRC investigators and none request to serve as first author and 2) at least one other PRSRC investigator serves as a co-author and “sponsor” of the project. First authorship on proposed or active writing projects–those that have not yet been submitted for publication–will be limited to two study-wide analyses and writing plans at any one time. Exceptions may be made by the publication committee. In general, the investigator who first conceived of the project and submitted a plan for the manuscript to the publication committee should have the option of serving as first author, so long as they do not exceed the allowable limit of proposed or active projects, and so long as they complete the paper within a reasonable amount of time.Co-authorship: The order of authorship on a paper should be proposed by the writing group to the PRSRC publication committee for that project. In general, the authors will appear in order of contribution to the writing and analysis of the paper. Credit will be given for participation in protocol development, actual writing of the manuscript, critical editing of the manuscript, and, in some cases, a preponderance of subject enrollment. When contributions to writing and analysis have been similar, priority should be given, in order of preference, to 1) PRSRC investigators or staff, 2) more junior authors, 3) those who have contributed to a greater degree to management and data collection for the study, and 4) PRSRC investigators or staff who have had fewer opportunities to author PRSRC papers.Disclosures: All financial relationships or conflicts of interest—real or perceived—should be disclosed in the appropriate section in all manuscripts. F. ANALYSIS OF DATA The Statistical and Data Management Center will finalize study-wide data and will perform analysis to support specific proposals upon priority and approval established by the publication committee. Analyses for main papers will be performed collaboratively by the Statistical and Data Management Center. Analyses done by other groups must be first approved by the publication committee. G. ASSIGNMENT AND APPROVAL PROCESS FOR ANALYSIS PROPOSALS 1. Analysis plans The first step for all PRSRC papers, abstracts, posters, and presentations of unpublished data is for an investigator to submit a plan to the publication committee. The plan should specify the content including the hypothesis, patient population (inclusion, exclusion criteria), and data analysis and tables. The proposed journal or meeting and deadlines need to be specified. Priority will be determined by the PRSRC publication committee. Ongoing dialogue and status updates will be periodically communicated by the PRSRC Statistical and Data Management Center and the investigator working group.