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