Patient Registries 101
A self paced course for advocacy groups building and managing disease registries, from defining purpose and governance through data architecture, collection, participants, partnerships, and analysis.
Open →Ten Habits of Great Data Analysts
The online companion to Dr. Danielle Boyce's book: reusable tools, checklists, and framing questions for analysts, collaborators, and learners. Includes a downloadable data-analysis request form.
Open →Ten Habits of Great Grant Writers
The companion to the second book in the series: templates, checklists, and worksheets for founders, advocacy groups, and researchers who want their mission funded. Includes an interactive fillable toolkit.
Open →Data Sharing in a Box
A ready to adapt playbook for publishing your data sharing documentation, governance, use agreements, IRB, a readiness assessment, and access procedures. Sample language throughout.
Open →How they fit togetherOne throughline
The resources are built to be used together. A rough path through them:
- Patient Registries 101 is the backbone, deciding what to build, standing up governance, choosing standards (CDEs, vocabularies, HPO, OMOP, FHIR), collecting data, and working with partners.
- Ten Habits of Great Data Analysts is the craft layer, how to plan an analysis, explore and verify data, and communicate results, whatever the registry.
- Ten Habits of Great Grant Writers is the funding layer, the second book in the series, with the templates and worksheets to get the work paid for.
- Data Sharing in a Box is the outbound layer, once you have data, how to document, govern, and responsibly share it.
They also connect to the rest of the site: the Registry Toolkit has the vendor tools and data dictionary, PAG Connections maps the advocacy groups you might recruit through, and Live Monitor shows the literature and trials your data can speak to. Each page carries "Related" links so you can move between them.
About this sectionWhat Learn does
The rest of EpilepsyLive shows what is happening in rare epilepsy research right now and maps the groups and infrastructure behind it. Learn is the how-to shelf beside it: longer-form courses, book companions, and templates that help advocacy groups, researchers, and students actually build and use the kind of infrastructure the other sections describe.
Each resource is a single, searchable page. Press / anywhere on the site to search across everything, including these.