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Clinical status (26)
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Parent/Caretaker (9)
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Quality of Life (15)
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Tests (27)
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Therapeutics (29)
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Browse By PRO Measure

Mental Health (5)
- - ASCQ-Me Emotional Impact (2)
  - ASCQ-Me Social Functioning (2)
  - Brief Resiliency Scale (1)
  - NeuroQOL Fatigue (1)
  - NIH Toolbox Loneliness (1)
  - Pearlin Enhanced Self-Efficacy Scale (1)
  - Profile of Mood States (POMS) (2)
  - PROMIS Anger (1)
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  - PROMIS Satisfaction with Participation in Discretionary Social Activities (1)
Neurodevelopment (6)
- - Achenbach Child Behavior Checklist (CBCL) (1)
  - Bayley Scale of Infant and Toddler Development (1)
  - Behavior Rating Inventory of Executive Function (BRIEF) (2)
  - California Verbal Learning Test (2)
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  - Peabody Picture Vocabulary Test (PPVT) (1)
Neuropsychological (7)
- - Adaptive Behavior Assessment System-II (1)
  - Adverse Childhood Experience Questionnaire (ACE-Q) (1)
  - Beery Developmental Test of Visual-Motor Integration (2)
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Pain (5)
- - ASCQ-Me Pain Episode (3)
  - ASCQ-Me Pain Impact (3)
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  - Brief Pain Inventory (BPI) (1)
  - PROMIS Neuropathic Pain Quality (2)
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Psychosocial (2)
- - Experiences of Discrimination Scale (1)
  - Family Environment Scale (FES) (1)
  - Life Stressors and Social Resources Inventory - Youth (LISRES-Y) (1)
Physical Function (3)
- - 6-Minute Walk Test (1)
  - PROMIS Physical Functioning (1)
  - Tanner Stage (1)
Quality of Care (3)
- - ASCQ-Me Healthcare Utilization (1)
  - ASCQ-Me Quality of Care (QOC) (1)
  - Patient Satisfaction Questionnaire (PSQ) (1)
Quality of Life (9)
- - ASCQ-Me SCD Medical History Checklist (1)
  - ASCQ-Me Sexual Health (1)
  - Child Health Questionnaire (CHQ) (1)
  - Ladder of Life (1)
  - Pediatric Quality of Life Inventory Child Report (ages 13-18) (1)
  - Pediatric Quality of Life Inventory Child Report (ages 8-12) (2)
  - Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18) (1)
  - Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12) (2)
  - PROMIS Global Health (1)
  - PROMIS Global Physical Health (1)
  - PROMIS Self-Efficacy for Managing Medications and Treatment (2)
  - SF-36 Health Survey (4)
Sleep (2)
- - ASCQ-Me Sleep Impact (2)
  - PROMIS Sleep Distrubance (1)
Technology Support (1)
- - Mobile App Rating Scale (1)

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Study ID	Study Name	Acronym	Study PI	Data Location	No. Participants*

* Participants may have participated in multiple studies