Part Two: Running the registry

Execution is a schedule of human checks, and the checks are what make the data comprehensive enough for anyone to use.

Chapters in this part

8. Verify the diagnosis before you count it. Evidence fitted to the purpose, read by a qualified person.
9. Keep records someone else could read. Every value and every cohort has a trail.
10. Track every sample and every link. Every identifier leads back to one consented person.
11. Hold the weekly meeting. Everyone who touches the data, together, every week.
12. Go and find out why the data are missing. Every blank has a cause.
13. Stay in touch on a schedule. Retention is a calendar of human contact.