Why I Wrote This Book

Many patient advocacy groups are building registries now, often with AI tools that can draft a consent form, a survey, or a summary report in minutes. Those tools are useful, and I use them. What I see again and again is that the registries that struggle are missing work no tool can do: a person who knows the participants, a protocol and consent settled before enrollment, a weekly look at who is in the cohort, and conversations with the researchers and regulators who will use the data. This book collects that work as habits a registry leader can practice, so that the data a community gives are usable by the people who can help it.