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

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)


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



Cascade testing of family members
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
Proposed Publications Policy
List of priority publications established by
LSSN
Investigators from contributing institutions
submit proposals for analyses outside
established list
Publications committee reviews proposals
Individual-level aggregate data given to
investigators for approved project
Publications committee and board
approves final manuscript
Analyses and Data Sharing
Based on institutions sharing de-identified data

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
Investigators from contributing institutions submit
proposals for analyses outside established list


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, 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
Publications committee reviews proposals
Publications committee approves final
manuscripts

5 – 7 individuals will comprise the publications committee,
based on skill set considerations



1 or 2 year terms
Flexibility
How to appoint?
Priority Publications
List of priority publications established by LSSN


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)


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



Cascade testing of family members
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
[email protected]