Hi HN,<p>We're the Douglas Neuroinformatics Platform[1], and we've been working on Open Data Capture, a web-based electronic data capture (EDC) platform for continuous clinical and research data collection. You can use it to administer instruments (like forms and interactive tasks) either in-person or remotely.<p>The platform is based on a fundamentally longitudinal data model. Unlike other EDC platforms, which are centered around the concept of a study with rigid timepoints, Open Data Capture is designed for continuous data capture. Data is associated with a given session, which includes metadata such as date, time, and mode (i.e., in-person or remote).<p>We've designed the system around the core restriction that many hospital institutions demand that data remain on-premise, while clinician-researchers often want to evaluate clients outside the institution with research questions. This has resulted in our innovative gateway concept, where assigned remote assessments are pushed onto an internet accessible service, and responses are encrypted in-place with HPKE[2] until the backend pulls them into the backend database. This makes the deployment firewall-friendly provided you can launch a minimal VPS or VM host somewhere globally accessible.<p>We're also a big fan of making things easy to deploy, so we supply a docker-compose stack which can bring up a demo instance easily to run locally.<p>The platform is free, open source, and written in TypeScript, with a NoSQL database underneath. Users can write instruments in TypeScript using a type-safe declarative form system (with native i18n support built in) or wrap and integrate completely arbitrary interactive tasks written in JavaScript (with optional support for TypeScript and JSX). Under the hood, this is based on dynamic imports and native ESM. There’s a browser-based IDE (the Instrument Playground) with live reloading and full Intellisense where you can try creating your own instruments.<p>We have a local deployment going live at our institution and appropriately-licensed (free) instruments we're deploying here will be integrated directly into the codebase.<p>Our future plans include expanding our instrument types to allow for binary data storage with an s3-like backend, and with abstractions for data types, like actigraphy, and MRI.<p>Check it out on GitHub[3], try the Instrument Playground[4], or see the Live Demo[5].<p>Would love to hear everybody’s thoughts!<p>Links:<p>[1] <a href="https://github.com/DouglasNeuroInformatics/">https://github.com/DouglasNeuroInformatics/</a><p>@gdevenyi @joshunrau<p>[2] <a href="https://datatracker.ietf.org/doc/rfc9180/" rel="nofollow">https://datatracker.ietf.org/doc/rfc9180/</a><p>[3] <a href="https://github.com/DouglasNeuroInformatics/OpenDataCapture">https://github.com/DouglasNeuroInformatics/OpenDataCapture</a><p>[4] <a href="https://playground.opendatacapture.org" rel="nofollow">https://playground.opendatacapture.org</a><p>[5] <a href="https://demo.opendatacapture.org" rel="nofollow">https://demo.opendatacapture.org</a>
Hi! We are interested in similar problems.<p>I worked on a new idea for EMR at UH Cancer Center called Pau (<a href="https://github.com/breck7/pau">https://github.com/breck7/pau</a>). It's now encompassed as a tiny part of a larger effort called Scroll (<a href="https://scroll.pub/" rel="nofollow">https://scroll.pub/</a>). You might be interested in learning about ScrollSets (<a href="https://breckyunits.com/scrollsets.html" rel="nofollow">https://breckyunits.com/scrollsets.html</a>)<p>Happy to chat if you want some feedback (email is breck7@gmail.com)<p>P.S. I love your focus on the concept of "instruments". Great word choice. Bullseye concept--well done!
I like the gateway concept as an alternative to opening the firewall. Are there any plans to add FHIR compatibility, for integrating with other FHIR systems?
very nice work! at Malmo University we maintain an open source mobile platform for data capture in clinical research: <a href="https://mobistudy.org/" rel="nofollow">https://mobistudy.org/</a><p>Our focus is more on sensors data rather than questionnaires, although we include those too.<p>Get in touch if you want to collaborate: dario.salvi at mau.se !
The Open Data Capture platform has a nice and modern interface. Its longitudinal data model is a useful feature for continuous clinical and research data collection, offering more flexibility compared to other EDC platforms tied to rigid study time points. I also found the instrument playground easy to use.