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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