WeCureUs Research
Aggregate community data for research.
WeCureUs is a patient-driven platform for people living with multiple sclerosis and other chronic neurological conditions. Participants contribute structured data about their lived experience. Researchers query that data in aggregate.
Every result is a population statistic. No individual record is accessible through any query. The query interface is structurally prevented from reaching any single participant. Every researcher reaches the same aggregate query interface that is available to any user, with no privileged data access and no individual-level data. WeCureUs does not sell, license, or monetize individual-level participant data, and does not accept any arrangement that conditions funding on influence over what the platform asks or how results are framed.
Register
Apply for researcher access. Any individual may apply. Affiliation is optional. Access requires review and approval before you sign in and receive a Research Access Key.
Query
Build an aggregate query: pick a module, a question, optional cohort filters, and see the distribution.
Documentation
What can be queried, how k-anonymity and generalization work, and how to cite WeCureUs data.
Terms
The Researcher Data Use Agreement. You accept it when you register.
How access works
- Register with your name, institution, stated purpose, and email, and agree to the Data Use Agreement. This starts an application. No Research Access Key is issued yet.
- An operator reviews your application and approves or declines it.
- If you are approved, we email you an invitation to sign in. The email contains a sign-in link, not your Research Access Key.
- You sign in with a one-time email link, the same passwordless method participants use. Only an approved researcher's email can sign in.
- On your first sign-in, your Research Access Key is shown once in your browser, with a copy button. Save it then, because it is not shown again and is never sent by email.
- Use the key with the query builder or the API. If you ever lose it, rotate it from your profile page, which reveals a new key and retires the old one.
A note on the data
Results are self-reported by participants and have not been independently verified against clinical records. Aggregate results are subject to a minimum cohort threshold. Where a small cohort cannot be reported at exact precision, results may be returned at a coarser granularity, such as a five-year band, rather than withheld.