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Table 2 Measures reviewed, selected, and adapted for SCDIC Registry Patient Enrollment Survey Form

From: Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry

  Reviewed Selected Adaptations
ASCQ-Me Pain Yes Yes  
ASCQ-Me Pain Episode Frequency and Severity Yes Yes  
ASCQ-Me Stiffness Impact Yes No  
ASCQ-Me Sleep Impact Yes Partial Kept items 1 and 3
ASCQ-ME Sickle Cell Medical History Checklist Yes Yes  
ASCQ-Me Emotional Impact Yes Partial Kept items 1 and 5
ASCQ-Me Social Functioning Impact Yes Yes  
PhenX Frequency of Sickle Cell Pain Episodes Per Year Yes No  
PhenX History of Transfusion Yes Yes  
PROMIS Pain Intensity Yes No  
PROMIS Fatigue Yes Yes  
PROMIS Pain Interference Yes No  
PROMIS Sleep Disturbance Yes No  
PROMIS-29 Profile (adult) Yes Partial Kept depression items
Neuro-QOL Cognitive Function Yes Yes  
PROMIS PQ-Neuro Yes Partial Kept item 3
PROMIS Global Health Yes No  
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172