Dravet Syndrome Patient Registries & Why We Need Them
An international Dravet syndrome registry will aid in the understanding of this rare epileptic encphalopathy.
Scientific Questions for the Ds Registry
Materials & Methods
Beta testing of this simple registry yielded trends including co-morbid conditions, average age of diagnosis, drugs that improve or worsen the condition, variation of “acceptable” seizure control, and parent understanding of medical questions.
USF has many years experience in registry development, the design and development of collaborative research involving genotype-phenotype analysis, and serves as the Data and Technology Coordinating Center for the NIH-funded Rare Diseases Clinical Research Network, which includes the Consortium for the clinical investigations of physicians and patients for the sake of neurological channelopathies.
Three systems will be developed:
Governance and procedures committee is needed to establish scientific review and governance process. We need the input of the Ds scientific community to move forward.