Table 2.

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

	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