OBJECTIVES:  The objective of knowledge study (TOCKS) was to quantify the patient burden and to characterize patient symptomatology and acceptance of treatment with anakinra in Cryopyrin-associated Periodic Syndrome (CAPS), an orphan disease.  Additionally, chart review and patient recall of symptoms, adverse events, and resource use were compared.  The aforementioned objectives were completed through the use of a unique online approach to gathering data and rapidly displaying the results. METHODS:  This retrospective medical chart review and concurrent online patient survey, conducted in Centers of Excellence for CAPS in Europe, was accomplished by analyzing data entered via internet-based case report forms (CRFs).  Data were entered into the CRFs by both study groups for two distinct collection periods—prior to and during the most recent 12 months of anakinra treatment. RESULTS:  Four sites (50 patients total) participated in TOCKS. Prior to entering data, users viewed an online tutorial to help in completing the survey.  No patients were lost to follow up and the data were successfully collected, analyzed, and reviewed via the online CRF and dynamically-generated data tables. This innovative online approach allowed users to enter de-identified data, in multiple sessions, even in the most remote destinations.  One patient successfully completed their survey in the Amazon. In addition, a unique identifier was randomly generated that linked chart review with patient recall data online. Site investigators were also able to view the dynamic tables and reports online and benchmark themselves against the other, encrypted, sites. CONCLUSIONS:  This novel internet technology allowed for efficient data collection from multiple sites and multiple sources within a short time frame. The unique identifier made it effortless to collect and compare the entries from the chart and from the patients for the same patient.