Family & Caregiver Resources
Print Resources
NARS1 Disorder Introductory Pamphlet
Understanding the Research Toolbox
Research Resources
Email us to coordinate blood and skin sample collection (more information on sample collection here)
Tell your story through our patient registry, RARE-X (find out more about this very important project here)
List of RARE-X surveys to prioritize:
Head-to-Toe Assessment (and any secondary surveys you get after completing this one)
Additional Surveys*
Vineland Adaptive Behavior Scales
ORCA (Observer-Reported Communication Ability) Measure
ABC Survey
QI-Disability Survey
CSHQ (Child Sleep Habits Questionnaire)
PediEAT (Pediatric Eating Assessment Tool)
Medication Survey
Diet Survey
CRID Alternative Participant ID Survey
Pediatric Epilepsy Learning Healthcare System (PELHS)
*These additional surveys can be found under subheadings 1) High Priority or 2) Patient Reported Data