Tools for Researchers

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If you have data

These tools help you document who decides, on what terms, and with what paperwork

Registry governance

The Governance Register

For advocacy groups that run their own registry; articles on governance bodies, consent, US and international regulation, data requests, agreement terms, industry negotiation, and preparing for the things that go wrong. Fill it in as you read, score a live request, then generate a draft governance packet to take to your attorney and Institutional Review Board.

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Templates, course, and worked examples

Registry Demo

The practical companion to The Governance Register. Data Sharing in a Box holds the paperwork: a data use agreement, a data access committee charter, an SOP and review rubric, IRB documentation, and a readiness assessment. Registries 101 runs from framing the question through consent, privacy, and network exchange. Plus vendor comparison and meeting worksheets, a data asset inventory, an ecosystem map, and a look at what a participant actually sees.

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Data asset register

Data Asset Intake

Catalog every data set, subset, model output, and code release in a research program, with governance and lineage built in. Add multiple assets and export the whole inventory as a spreadsheet or a printable report.

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Enclaves

If the data live in an enclave

Trusted research environments, where the data stay put, your tools come to the data, and everything that leaves is reviewed. For groups asked to host one and researchers asked to work in one.

Guide · Trusted research environments

Working Inside a Trusted Research Environment

What a data enclave is, why downloading is not an option, how the IRB connects, what it takes to set one up, and the working practices inside, in named stages for students, registry holders, and returning researchers, with a jump bar so each reader can start at theirs.

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Code translation

Enclave Ready

Paste Stata, SPSS, or SAS code and get Python, R, and SQL equivalents side by side, with flags for commands that conflict with enclave rules, notes on how disclosure review commonly treats each output, and the full crosswalk reference organized by task. Runs entirely in your browser; pasted code goes nowhere.

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Free classroom download

The Locked Room

A one-page explainer for students heading into data science: how researchers really work with protected health data, why downloading is not an option, and which skills to build now, including why an AI assistant will probably not follow them inside.

US letter; also available in A4.

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Methods

If you are designing a study

Find data you can actually get, shape the question, test whether those data can answer it, and check what you are about to publish.

Secondary data catalog

Findable

103 vetted secondary data sources and 270 links that go straight to the files. Health, clinical, genomic, environmental, and social data, each with what is in it, how you get access, and what the license permits. Search it, filter by subject and access, and download the whole catalog as a spreadsheet.

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Research question builder

Analytic Use Case Generator

Turn a clinical idea into a well-formed OHDSI research question, Mad Libs style, then gauge its feasibility for a network study. Build a set and download it as a report.

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External comparator assessment

RWDExchange

Evaluate whether real world data can serve as an external comparator in a clinical trial. Score each variable across four regulatory frameworks, map it to OMOP concepts, inventory confounders, and export a print-ready feasibility report.

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LLM output validation

Verify & Cite

Check what a language model gives you against its sources, step by step: decompose the output into claims, verify every citation and figure, and flag what doesn't hold. Each step cites the method behind it, and you export a defensible evaluation record.

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Proposals

If you are writing a proposal

Patient engagement

Under construction

Patient Centeredness and Engagement Self-Check

Six stages for the patient and stakeholder engagement sections of a research proposal: who is at the table, when partners join, what decisions they hold, what is budgeted, what support and access are provided, and how the engagement will be evaluated. Build a partner roster, answer the questions, and the tool checks 79 conditions drawn from published guidance, states plainly where a claim is not yet supported by a described mechanism, and drafts seven proposal paragraphs from your answers.

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Pipelines

If you are building the data

Open-source pipelines that turn health records into standardized, research-ready data, and a way to see what a transformation is deciding before you write any of it.

EHR-to-OMOP pipeline

Registry Forge, Enterprise Edition

The full open-source pipeline: pull EHR data via SMART-on-FHIR and bulk exports, parse and map it to OMOP, then explore cohorts, exposures, and devices through ready-made dashboards.

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Personal records to cohort

Registry Forge, Patient Edition

Turn health records people download themselves, from MyChart, Blue Button, and other C-CDA exports, into a research-ready cohort data set, with a live demo, EDA reports, and a privacy-first workflow.

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FHIR bundle inspector

Bundle Reader

Paste a FHIR bundle and see where every resource would go in the OMOP CDM before you write any code, with the assumptions made visible: imputed dates, invented visit boundaries, inverted statuses, missing units, codes that map to nothing. Five built-in exercises, including a real example from the FHIR specification. Reads R4, R5, and R6, runs entirely in your browser, and downloads to a single file for use with real records.

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Lived experience

If you are living it

Built from caregiving and advocacy, for the people doing it.

Hospital stay accommodations

Hospital Packet Builder

For families of people who cannot be left alone. Build a one page fact sheet on the accommodations you need, a door sign, packing lists for both of you, questions to settle before you arrive, and ready-to-send records requests. Fill it in, print it, and save it to reuse at the next admission.

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Live research monitor

EpilepsyLive

A live research monitor for epilepsy: research, registries, and related tools, courses, and resources, in one place.

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Nonprofits

If you run a nonprofit

Browser tools for the volunteer who is the grant writer, the board secretary, and the technology committee in the same week. Everything runs on your own computer; nothing you type is saved or sent anywhere.

AI prompts, in your voice

The Nonprofit AI Prompt Studio

AI drafts sound like a nonprofit that does not exist because the model does not know yours. Fill in your organization once, pick a task, from grant narratives to donor letters to board reports, and the Studio assembles a prompt that puts your facts in, keeps your language rules, and forbids invented numbers.

Also free with it: the 15-page printable workbook and the 25-template prompt library as PDF or plain text.

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Board governance

The Well-Run Board

For the board that exists on paper and now has to function: a governance readiness self-assessment, a meeting cadence planner, the working minimum of Robert's Rules, a quorum and vote calculator, six ready-to-send board emails, and a checklist of questions to bring to a lawyer.

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Grant writing

The Grant Writer's Toolkit

The fillable tools from the Ten Habits companion site, following a proposal from first read of the funding announcement through submission: fit checks, goal worksheets, letters of intent and support, a capacity one-pager, and a project timeline.

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Reference

If you are learning or teaching

Plain-language explanations of the concepts covered by some of the other tools, quick-reference sheets and dated worked examples for the OMOP common data model, and a planner for running your courses.

Live monitor and OMOP reference

MCH·OMOP Live

Maternal and child health meets the OMOP common data model. A live monitor of articles, preprints, funding, videos, and code, drillable to MCH topics and exportable to CSV, plus the teaching material around it: a starting path for people new to observational research, three printable cheat sheets on vocabulary, cohort design, and treatment pathways, and dated worked examples on menopause and preterm labor that take one clinical idea from a vocabulary search through concept sets, cohorts, and a feasibility assessment. Also a plain-language explorer for the 258 fields of the model.

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Course organization

The Course Planner

One place to organize a shared, online, or inherited course: the schedule, the teaching team, live session plans, student due dates alongside grading deadlines, the questions students keep asking, and the materials that still need updating. Download a draft when you are done and upload it next term to keep going.

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Searchable study guide

In Your Own Words

Epidemiology, biostatistics, and informatics concepts in plain language: 252 defined terms, the core formulas, and the worksheets, all searchable.

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Books & toolkits

Ten Habits

Two short, plainspoken books about data analytics and grant writing drawn from three decades in the field, each paired with a free toolkit of templates, checklists, and resources you can start using today.

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