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This document outlines the goals and questions central to the Lynch Syndrome Screening Network's data-sharing protocols. Key objectives include demonstrating the cost-effectiveness of Lynch Syndrome screening for funding purposes, evaluating the prevalence of Lynch Syndrome in newly diagnosed colorectal and endometrial cancers, and examining family history patterns associated with mutations. The proposed guidelines also discuss authorship responsibilities, aggregate data access, and the structure of the publications committee, ensuring transparency and collaboration among institutions.
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Research, Data Sharing & Publication/Authorship Protocols Lynch Syndrome Screening Network - October 27, 2012
Data Goals/Questions • Show cost effectiveness of LS screening, for institutional and state funding purposes (newborn screening model) • Cascade testing of family members • Provide data to promote appropriate practices • Prevalence of LS among newly diagnosed colorectal and endometrial cancers • Penetrance of LS for various related cancers • Family history patterns associated with mutation, including proportion who do not meet Bethesda or Amsterdam criteria • Measure implementation of LS screening • Number of newly diagnosed colorectal and endometrial cancers screened over time • Proportion of positive screens for each screening protocol • Provide data to health plans in support of coverage policies
Analyses and Data Sharing • Institutions will always have access to their owndata • Some aggregate analyses will be performed by staff affiliated with LSSN • Should there be access to aggregate raw data (vs. results of an analysis) for LSSN investigators? • More sharing is better • Should allow non-full members to author publications in conjunction with full member institutions, especially for LSSN members
Proposals and Writing • Their team will have primary authorship/writing responsibilities • Should meet contribution guidelines • Deadlines for completion? • Authorship guidelines vary by journal • Solicit volunteers from LSSN for editing? • How to establish priority for authorship?
International Committee of Medical Journal Editors Authors should meet all three conditions: • Substantial contribution to conception and design, acquisition of data, oranalysis and interpretation of data;AND • Draft the articleorrevise it critically for important intellectual content; AND • Give final approval of the version to be published
Publications Committee • 5 – 7 individuals will comprise the publications committee, based on skill set considerations • 1 or 2 year terms • Flexibility • How to appoint?
Priority Publications • These publications will include a certain number of authors from every contributing institution • Writing team will include the Board and others TBD • How to finalize official topic list? • Number from each institution? • Authorship order?
Data Goals/Questions • Show cost effectiveness of LS screening, for institutional and state funding purposes (newborn screening model) • Cascade testing of family members • Provide data to promote appropriate practices • Prevalence of LS among newly diagnosed colorectal and endometrial cancers • Penetrance of LS for various related cancers • Family history patterns associated with mutation, including proportion who do not meet Bethesda or Amsterdam criteria • Measure implementation of LS screening • Number of newly diagnosed colorectal and endometrial cancers screened over time • Proportion of positive screens for each screening protocol • Provide data to health plans in support of coverage policies
Thoughts? Contact Sarah Mange manges@michigan.gov
