FHIR Granular Sensitive Data Segmentation.

Background:  Due to fear of stigma, patients want more control over the sharing of sensitive medical records. The Substance Abuse and Mental Health Administration (SAMHSA) and the Office of the National Coordinator (ONC) supported the development of standards-compliant, consent-respecting medical record exchange technology using metadata labeling (e.g.

Multi-center improvement in screening for dystonia in young people with cerebral palsy.

Background And Objectives: Dystonia is a common, debilitating, and often treatment refractory motor symptom of cerebral palsy (CP), affecting 70-80% of this population based on research assessments. However, routine clinical evaluation for dystonia in CP has failed to match these expected numbers. Addressing this diagnostic gap is a medical imperative because the presence of dystonia rules in or out certain treatments for motor symptoms in CP.

Physician Approaches to the Pharmacologic Treatment of Dystonia in Cerebral Palsy.

Objective: To determine how physicians approach pharmacologic dystonia treatment in people with CP and assess physician readiness to participate in a randomized trial comparing existing pharmacologic dystonia treatments.

Methods: We administered a REDCap survey to physician members of the American Academy of Cerebral Palsy and Developmental Medicine and of the Child Neurology Society to assess which pharmacologic agents they use to treat dystonia in CP and their preferred indications and dosing.

Results: Of 479 physicians surveyed, 240 (50%) responded.