Showing 3 ideas for tag "outcomes"
(@ilenepennmiller) kudos icon 14

Transformative Research Priorities for the Epilepsies

Urgent Call to Structurally Transform the Epilepsy Ecosystem trending idea

As a community of 19 patient and professional groups across the epilepsy community, we applaud the work of the Benchmark Committee and NINDS for launching this open call for transformative priorities for "Curing the Epilepsies". Looking back over the 20 years invested in national conferences toward Curing the Epilepsies and 3 cycles of Benchmarks to set priorities, we are concerned that progress for persons living and... more »

Voting

Awaiting Votes
Ideate
(@annapurna.poduri) kudos icon 14

Transformative Research Priorities for the Epilepsies

Accelerating precision diagnosis to precision treatment trending idea

This priority will transform epilepsy research by integrating modern science into modern care for patients with epilepsy.

For example, a patient with as yet unexplained non-acquired epilepsy should be considered to have genetic epilepsy until proven otherwise and appropriately evaluated. If the first line of evaluation is unrevealing he or she should have an iterative re-analysis of cause in tandem with empiric therapy.... more »

Voting

Awaiting Votes
Ideate
(@jayetta) kudos icon 17

Transformative Research Priorities for the Epilepsies

Laying the Foundation for an Epilepsy Moonshot trending idea

More substantive research priorities, however well framed and targeted, can not alone overcome the inefficiencies and silo-ed structure for clinical care and research in the epilepsies.

By integrating clinical care and research—the standard for decades in pediatric oncology—we will get on a path where we will start seeing improvements in the quality of life for all those living with and too often dying from epilepsy.... more »

Voting

Awaiting Votes
Ideate