EpiLinked is an observational, community-driven data collection platform focused on epilepsy treatment and pregnancy outcomes. The platform gathers structured, self-reported data contributed voluntarily by individuals with lived experience.
Data collected on EpiLinked are self-reported and descriptive in nature. The platform does not intervene, randomize, or assign treatments.
The dataset represents an open, continuously growing observational cohort without predefined inclusion or exclusion criteria beyond user consent.
Entries may be submitted during pregnancy or retrospectively after pregnancy has concluded.
All data are provided directly by users through structured forms, optionally supplemented with free-text comments.
Variables may include medications, dosages, treatment changes, seizure frequency, pregnancy course, pregnancy outcomes, and contextual comments.
No external validation or medical record verification is performed. Entries reflect the participant’s own understanding and recollection.
Participation is entirely voluntary. Users may choose how much information to share and may stop participating at any time.
Before submitting data, users are informed that entries are public, descriptive, and not medical advice.
The primary purpose of data collection is to support community knowledge-sharing and exploratory analysis of real-world experiences.
Analyses are descriptive and exploratory. Aggregated statistics may be generated to identify patterns or trends but do not imply causation.
Aggregated and anonymized data may be used for research, educational content, or collaboration with academic or medical institutions.
Data may be affected by recall bias, reporting bias, and incomplete information.
Participation is self-selected and may not be representative of the broader population of people with epilepsy.
The dataset is not designed to replace clinical studies or registries and should be interpreted accordingly.
EpiLinked does not provide medical advice or treatment recommendations. Users are encouraged to consult qualified healthcare professionals for clinical decisions.