EpiLinked is a platform for the collection and sharing of self-reported experiences related to epilepsy, including treatment histories and pregnancy-related outcomes. The platform is intended to support descriptive aggregation of patient-reported data and shared learning.
Anyone with personal experience of epilepsy treatment or pregnancy can contribute voluntarily.
Yes. Individual entries are visible on the platform to other users, and may also become publicly visible and searchable via external search engines, now or in the future. Do not include personal identifiers (name, address, hospital, etc.). Share only what you are comfortable being public.
Platform users can see individual entries, and entries may also be visible to the general public, including via search engines. Aggregated and anonymized data may also be used for research.
You can start adding entries without creating an account. To return later or manage your entries, email verification is required.
Yes. After logging in, you can edit or delete your entries anytime.
Any entry with accurate self-reported experiences (medications, dosages, seizure frequency, pregnancy outcomes) is valuable.
No. EpiLinked is descriptive only. Entries are not recommendations or medical advice.
No. Always consult your healthcare provider before changing medications or dosages.
Yes. Be respectful and avoid sharing personal identifiers. Focus on experiences and observations.