ICHOM Epilepsy Standard Sets

The International Consortium for Health Outcome Measurement has launced their Adult and Pediatric Epilepsy Set of Patient-Centered Outcome Measures.  This is a significant step towards improving the quality of care for epilepsy patients globally. By tracking outcomes and collecting data in routine clinical care settings, healthcare providers can identify areas for improvement and make informed decisions to enhance patient care.

The availability of a standardised set of outcome measures for epilepsy patients across all age groups allows for consistent and comparable data collection and analysis, which can facilitate benchmarking and sharing of best practices across healthcare settings worldwide.

Please read more at https://www.ichom.org/patient-centered-outcome-measure/pediatric-and-adult-epilepsy/

Core Health Outcomes In Childhood Epilepsy (CHOICE)

The Core Health Outcomes In Childhood Epilepsy (CHOICE) study developed the first ever core outcome set for childhood epilepsy research. The team obtained consensus between young people, parents and professionals on which aspects of health and quality of life are most important to measure for children with epilepsy. They used the established, systematic and transparent methods advocated by the COMET Initiative and identified 38 outcomes across 10 domains that contributed toward a Core Outcome Set for use in childhood epilepsy research

Please read more at https://castlestudy.org.uk/castle-projects/choice-core-health-outcomes-in-childhood-epilepsy/

 National Institute of Neurological Disorders and Stroke Common Data Elements (NINDS-CDE)

The US based National Institute of Neurological Disorders and Stroke (NINDS) hdeveloping data standards for clinical research. CDEs are Classified as Core, Supplemental - Highly Recommended, Supplemental, or Exploratory.  The data elements to be used by an investigator when beginning a research study should be used in all NINDS funded and related studies. 

In the most up-to-date version, no outcomes have been classified as Core, but the following tools have been assigned as Highly Recommended:

Seizure outcomes

Cognitive outcomes

Neuropsychological / behavioural outcomes:

Quality of life

No adverse event outcomes classified as Highly Recommended, but the Adverse Event Tracking Log, Hague Side Effects Scale and VA Toxicity Scale are classified as Supplemental. 

Please learn more at https://www.commondataelements.ninds.nih.gov/epilepsy