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 practicesPrevalence of LS among newly diagnosed colorectal and endometrial cancersPenetrance of LS for various related cancersFamily history patterns associated with mutation, including proportion who do not meet Bethesda or Amsterdam criteria

Measure implementation of LS screeningNumber of newly diagnosed colorectal and endometrial cancers screened over timeProportion of positive screens for each screening protocol

Provide data to health plans in support of coverage policies

Proposed Publications Policy

Analyses and Data Sharing

Institutions will always have access to their own data

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 responsibilitiesShould 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 EditorsAuthors should meet all three conditions:

Substantial contribution to conception and design, acquisition of data, or analysis and interpretation of data; AND

Draft the article or revise 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 practicesPrevalence of LS among newly diagnosed colorectal and endometrial cancersPenetrance of LS for various related cancersFamily history patterns associated with mutation, including proportion who do not meet Bethesda or Amsterdam criteria

Measure implementation of LS screeningNumber of newly diagnosed colorectal and endometrial cancers screened over timeProportion of positive screens for each screening protocol

Provide data to health plans in support of coverage policies

Thoughts?

Contact Sarah Mange

manges@michigan.gov