Research, Data Sharing & Publication/Authorship Protocols

1. Research, Data Sharing & Publication/Authorship Protocols Lynch Syndrome Screening Network - October 27, 2012

2. 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

3. Proposed Publications Policy

4. 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

5. 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?

6. 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

7. Publications Committee • 5 – 7 individuals will comprise the publications committee, based on skill set considerations • 1 or 2 year terms • Flexibility • How to appoint?

8. 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?

9. 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

10. Thoughts? Contact Sarah Mange manges@michigan.gov