Patient Registries 101
This self-paced course for advocacy groups building and managing disease registries is temporarily offline while it is reviewed and updated. It will return once the revision is done.
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 online companion to the grant-writing book: habits, checklists, and a set of interactive worksheets — goal worksheet, letters of intent and support, timelines, budgets, and diplomacy tools — you can fill in and reuse.
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 →OMOP & OHDSI
A gentle path into observational research, the OMOP common data model, and the OHDSI community — short videos, a starter path, the foundational methods reading, an example study protocol, and a shortcut into the OHDSI forums.
Open →OMOP Data Dictionary
A searchable, plain-language, field-level reference for the OMOP CDM — 258 fields across 24 tables. Search a term or filter to one table to learn what the model actually holds.
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. (Temporarily offline while it's being revised.)
- 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 habits and worksheets that turn a good idea into a fundable proposal.
- Data Sharing in a Box is the outbound layer — once you have data, how to document, govern, and responsibly share it.
- OMOP & OHDSI and the OMOP Data Dictionary are the common-data-model layer — the standards and community that make the registry work here interoperable and analysable across sites.
They also connect to the rest of the site: the Registry Toolkit has the maturity model, data dictionary, and vendor tools, PAG Directory maps the advocacy groups you might recruit through, Conditions organises the genes and disease families, 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 NeurodegenResearchLive shows what is happening in research right now and maps the groups and infrastructure behind it. Learn is the how-to shelf beside it: longer-form courses, book companions, templates, and the OMOP/OHDSI foundations that help advocacy groups, researchers, and students actually build and use the kind of infrastructure the other sections describe.