Studytrax

Patient Registries

Registries that deliver to everyone.

  • Participants who want to come back.
  • Data put to work delivering value.
  • Worth more every year.

Studytrax connects your participants, data, and research from the start. Keep people involved, put data to work in analysis and writing, and add new capabilities as your registry grows.

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If you run a disease organization.

A home for the community: natural history, a trial-ready cohort, samples, and something to give participants back.

If you run a clinic or research registry.

Visit notes from the record, less staff time, multi-site, and a trial that grows out of the cohort instead of beside it.

Same platform. Same fit check.

Participants who want to come back.

A registry asks for years. People keep giving data that long only if the registry keeps giving them a reason to stay connected to the research.

Know something.

Information specific to their condition and their own trajectory, so the portal is useful even when nothing is due.

Contribute something.

Patient-reported outcomes, diaries, and samples, from home, on their schedule.

Get something back.

Messages from the study team, recognition and rewards for what they’ve done, and the studies they’re eligible to join, from the same account.

Participants who see a place in the research stay. Participants who only see forms leave.

Data put to work delivering value.

Collection isn’t the finish line. Registry data can support care today, answer a research question this week, and become the start of the next study.

In care.

Clinic notes, visual case summaries, and a longitudinal view at the visit, generated from live registry data. For registries with a clinic behind them, this is where the data pay for themselves first.

In research.

Point-and-click access to the data. Re-coded and calculated variables on the fly. Descriptive statistics, outlier detection, and queries that track data issues to resolution. Export to Excel, CSV, SPSS, or SAS when you need it.

In writing.

Tables, figures, IRB reports, and manuscripts tied to the live registry, rerun instead of rebuilt.

See how Workbench works

Worth more every year.

Every new study should add to the registry, not start beside it.

Patient
RegistryOne longitudinal recordOne participant
account
Clinical trialGets participants and history. Gives new data to the record.
BiobankGets samples on the registry schedule. Gives specimens linked to phenotype.
Sub-studies and surveysGets the same participants. Gives answers the registry didn't have.
Research and publicationGets datasets and tables from live data. Gives findings back to the community.
Clinical careGets the record at the visit. Gives notes and observations.
ParticipantGives outcomes and history. Gets information, resources, and rewards.
Every connection runs both ways. Nothing is entered twice, and nothing starts beside the registry.

One participant account.

Registry, trial, survey, and biobank, without a second login. Data flow between them instead of being entered twice.

A new study gets its own schedule and permissions.

And shares the participants and history it needs.

Samples on the registry calendar.

Biotrax records each specimen against the same participant and visit, collected when the protocol says to.

Reused, not rebuilt.

Forms, tables, and IRB reports carry into the next study. The next protocol and the next grant start from the registry you already have.

Move past the database mindset.

We just need a database

But then...

  • Poor dataSiloed, duplicated, difficult to trust
  • Everything is manualTasks that should happen automatically become staff work
  • Participants get nothing backThey keep giving data and drift away
  • Care and papers happen somewhere elseThe data wait for an export
  • The next study starts in another systemParticipants are entered twice
The database was never supposed to be the destination.

Already have a registry? If the data are unusable, participation is forms only, or the trial runs next door, the platform is the problem, not the team. Moving a registry to Studytrax includes the transfer from REDCap at no cost.

How Studytrax compares to REDCap

What changing that looks like.

The Cure HHT registry, four months after moving to Studytrax.

Before
Sites1
DataPoor quality
Clinical useNone
OutputYears of effort
4 monthson Studytrax
After
Sites15
DataLive and complete
Clinical useAt the point of care
OutputFirst publication

Starting a registry, or stuck with one that only stores data?

Patient Registries: Designing and Delivering Long-Term Value.

The book: think, design, deliver. Everything on this page, worked through in detail with worksheets for your team.

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A short Field Note on what the first step looks like: Starting a Patient Registry?

A video series on designing, launching, and keeping a registry valuable over time: Watch the series

Change the story.

Tell us where your registry is today, and we’ll show you what moving looks like.

Book a 5-minute fit check