Projects

Sample projects

Structural projects

  • Disease Concept Map Drafts/TREND Community Voice Reports
  • FIND-OUT project (Fast Infant Neurodevelopmental Diagnosis – Outpatient Testing)
  • Natural History Gold Standard Data Element Project
  • Rent-a-Science-Officer program
  • Searchable catalog of resources across member disorders
  • Strategic research plans for each member organization
  • Unique Universal ID project – The CRID

Outcome measure projects

  • Anxiety/Behavior outcome measure (ORBSID/BIAPAS)
  • Cortical Visual Impairment (CVI) outcome measure
  • DEE-P COMBINED Outcomes Project for Severe DEEs
  • ORCA Communication Measure Project with Duke University

Biomarker projects

  • Biorepository
  • CSF Biomarker project
  • DEE-P COMBINED Outcomes Project for Severe DEEs
  • High-throughput assay development

Collaborative projects

  • AGENDA, REN Project for joint conference on BOMs
  • Basket Trial project
  • DEE-P COMBINED Outcomes Project for Severe DEEs
    Disease Concept Map
  • Drafts/TREND Community Voice Reports
  • ORCA Communication Measure Project with Duke University
  • Unique Universal ID project – The CRID