The database is designed to manage clinical and research data for our epilepsy patients.

The only people who can access it are approved by the hospital to be involved in epilepsy patients’ care, and have ethics (IRB/HRPP) approved involvement in the research studies included here. The database is housed on a HIPAA-compliant server within the hospital.

Data is entered in the following contexts.

1. Neuropsychological test data. This allows data to be accessed when patients are seen in later appointments or if for a study.

2. Epilepsy conference data. Summaries of a patient’s findings focused on the cause of their seizures and the best treatment.

3. Stimulation mapping. Summaries of a patient’s findings are focused on identifying and preserving critical language areas.

4. Surgeries. Surgery scheduling and procedures are tracked. This allows us to ensure patients receive the required preoperative and postoperative neuropsych assessments.

5. Functional MRI (fMRI). Referrals, scheduling, and results are tracked and stored. This ensures data is available for research and the team.

For each of these contexts, data can be entered multiple times. For example, patients can have multiple neuropsych assessments, multiple conference presentations (or summaries). In redcap terms, the data entry forms can repeat. Instructions on entry are on the next page (below).

Case IDs

Each case (redcap ‘record’) needs to have an identifier that can be calculated easily when a patient’s name is given. This allows (e.g.) record IDs to be generated when neuropsych test data is prepared for upload completely independent of NED.

Record ids therefore have the format

lastname_firstname_dob

Where last and first name are all lower case, and the date of birth (dob) is in format YYYYMMDD

It is also necessary sometimes to identify all data from a single case session; such as the multiple tasks (redcap forms) from a single neuropsych assessment or a single research study encounter (paired neuropsych assessment and fMRI). To simplify things in redcap each form therefore also has a session ID

lastname_firstname_dob_doe

Where last and first name are all lower case; and both the date of birth (dob) and date of encounter (doe) are in format YYYYMMDD.

Onward to –

• Data entry.

• Form creation.

• Data uploads.