Cohorts: Patient Registries for Rare Disease Charities

Patient registries are the backbone of rare disease research. They help researchers understand how a condition progresses, help charities find families for clinical trials, and give communities a voice in the science that affects them. Yet most small rare disease charities face an impossible choice: pay tens of thousands of pounds or more for an enterprise registry system designed for pharmaceutical companies, or make do with spreadsheets that offer no real security, audit trail or GDPR compliance.

Cohorts is Lluminate's answer to that gap. It is a general-purpose patient registry platform built specifically for small-to-medium rare disease charities: affordable, GDPR-compliant and designed to be used by families, not just data managers.

Specific in configuration, general in architecture

Every feature in Cohorts is designed to work for one charity and translate to any other. Nothing is hard-coded that doesn't need to be:

How it works

Each organisation gets its own registry at its own subdomain (for example, organisation.cohorts.io), with its own branding and an optional custom domain. Behind the scenes, every registry runs on its own separate database, so one organisation's data is physically isolated from another's.

The platform includes:

• Role-based access for owners, admins, clinicians, researchers and members, with access to each patient record granted explicitly and scoped to what each person needs to see.
• Family-controlled professional access, so clinicians can be given access to a record with approval from the family and the organisation.
• Modern, secure sign-in, with mandatory two-factor authentication through passkeys, authenticator apps or SMS codes, plus sign-in with Google, Apple or Microsoft.
• An installable web app that works across phones, tablets and desktops.
• Integrations with Slack and Mailchimp, plus Apple and Google Wallet passes.
• Privacy-safe reporting, where aggregate reports automatically hide any group of five or fewer patients.

Security and privacy by design

Registries hold some of the most sensitive data there is, so Cohorts treats protection as a foundation rather than a feature:

• European data residency. All patient data is stored within the EEA, on servers in Germany or Finland.
• Pseudonymous records. Patient records carry a registry handle rather than a name, and direct identifiers such as names, dates of birth and NHS numbers are stored separately and encrypted field by field.
• A full audit trail. Every change to patient data is recorded, and every time someone views a patient's identity, that is logged too.
• Built to recognised standards. Cohorts is designed for UK and EU GDPR and is being built towards the NHS Data Security and Protection Toolkit, with ISO 27001 on the roadmap.

A public summary of hosting, sub-processors and security controls is available on the Cohorts trust page.

Why it matters

There are thousands of identified rare diseases, and the large majority still have no effective treatment. Registries are critical infrastructure for research, trial recruitment and natural history studies, but the organisations closest to these conditions are often the least able to afford them.

Cohorts is built for those organisations: the hundreds of rare disease charities across the UK and Europe that need a secure, professional registry but don't have the budget to commission one from scratch. Build it once with a partner who knows the community, prove it with a live deployment, and make it available to every charity that needs it.