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Data team roles

A registry needs a core group that works with the data every week and a named list of the expertise it will pull in. This page goes with Chapter 6. The role names below are a starting point; change them to fit your registry.

Entry
Registry
Condition
Completed by (role)
Date
Version

Core roles

Role What this role does Who fills it (role or organization) Time committed Backup
Clinical research coordinator Screens, consents, follows up with, and supports participants; keeps the study's records
Data manager Owns the data dictionary and the curation log; runs the data quality checks
Analyst Downloads the data; runs basic analytics and presents them to the team on a schedule
Principal investigator Accountable for the protocol, the IRB submission, and what is reported
Clinical advisor Judges which questions are clinically relevant; reviews diagnostic evidence

Advisors on call

Match the advisor to the question. If you cannot name the expertise you are missing, ask a consortium in your disease area.

Kind of question Expertise needed Advisor (role or organization) How to reach them Last consulted
Which questions are clinically relevant
Variant interpretation
Statistics and missing data
Omics analysis
Health record data and informatics
Regulatory questions
Qualitative methods
Lived experience

One person, two roles

If the coordinator and the data manager are the same person, record which role each task belongs to.

Task Which role this task belongs to Notes

Denominator check before a percentage is shared

Percentage to be shared Numerator Denominator, and who is in it Records set aside, and why Checked by (role) Date

Publications ahead

Question Analyst Advisor Cut of the data Target date