Who Should Read This Book

It is for the parent who started a registry because no one else would.

It is for the patient advocacy group leader who finds themselves running a research project without a research background.

It is for the board member deciding what a registry should cost and what it should produce.

It is for the study coordinator, paid or volunteer, who keeps a registry running.

It is for the data scientist joining a registry who has never worked inside a clinical study.

It is for the clinician or researcher asked to advise a family-led registry.

It is for anyone wondering how much of a registry AI can build.