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Study Detail

Study ID	1005
Name	Sickle Cell Disease Implementation Consortium Registry
Contact Email	byk@rti.org
Acronym	SCDIC Registry
Period	ongoing
Design	Registry Study
Study PI	Barbara Kroner
Institution	RTI International
URL	https://scdic.rti.org/
CTGovID	NA
Funding Agency	NHLBI
Grant Number	1U24HL133948-01

Overview	The Sickle Cell Disease Implementation Consortium (SCDIC) is the first research program to use implementation science to identify and address barriers to quality care in SCD. Patients enrolled in the implementation research studies may be selected from the SCD Registry. The Registry is designed during Year 1 and begins recruitment in Year 2. The goal is to enroll at least 2,400 patients (300 per Center) between the ages of 15 and 45 years by the end of January 2019 or the time that recruitment for the implementation research studies begins. To achieve these goals, the Registry will:a. Develop standard data collection tools and methods which will be used to characterize the SCD population leading to the development and implementation of research studies;b. Identify gaps in research;c. Conduct data queries and analyze data collected;d. Provide access to these resources to Registry investigators who are interested in advancing the understanding of the SCD population; ande. Publish and disseminate results.
Focus Areas	1. Pregnancy/Fertility 2. Acute/Chronic Pain 3. Organ Function 4. Hydroxyurea vs. Non-Hydroxyurea Patients and SCD Diagnosis Comparisons 5. Adherence/Access to Care
Outcomes	1. SCD Complications/Co-morbidities 2. SCD Treatment 3. SCD Access to Care 4. SCD Quality of life and Patient Reported Outcomes

Data Location	BioData Catalyst
Biospecimen Available	N/A
Data Consent	Consent form includes statement that de-identified data will be shared
Biospecimen Consent	No sample
Contact Consent	Yes, with permission on consent
Genomic Data	No

Age Range	0-17
No. Participants	2436
Inclusion Criteria	1. Age 15 years up to and including 45 years 2. English speaking 3. Confirmed SCD diagnosis. Confirmed is defined as supported by documentation in the medical record of a positive test for one of the following: Hb SS, Hb SC, Hb Sß-thalassemia, Hb SO, Hb SD, Hb SG, Hb SE, Hb SF. If no medical record is available, the enrolling Center may conduct its own laboratory test as confirmation. 4. Willing and cognitively able to give informed consent and complete the Patient Enrollment Survey
Exclusion Criteria	1. Unwilling or unable to give consent/assent or complete the Patient Enrollment Survey 2. Sickle cell trait (i.e., Hb AS) 3. Successful bone marrow transplant

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Study Publications

Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC).
Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium.
Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care.

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Mental Health (49)

Mental Health (49)

Data Element	Variables
ASCQ-Me Emotional Impact	p1f5q37e p1f5q37f p2f1q33e p2f1q33f
ASCQ-Me Social Functioning	p1f5q39 p1f5q39a p1f5q39b p2f1q36a p2f1q36b p3f1q38c_v3v4 p3f1q38d_v3v4 p3f1q38e_v3v4
Brief Resiliency Scale	p3f1q40a_v3v4 p3f1q40b_v3v4 p3f1q40c_v3v4 p3f1q40d_v3v4 p3f1q40e_v3v4 p3f1q40f_v3v4
NeuroQOL Fatigue	p1f5q37g p2f1q33g
NIH Toolbox Loneliness	p3f1q39a_v3v4 p3f1q39b_v3v4 p3f1q39c_v3v4 p3f1q39d_v3v4 p3f1q39e_v3v4 p3f1q39f_v3v4
Pearlin Enhanced Self-Efficacy Scale
Profile of Mood States (POMS)
PROMIS Anger
PROMIS Anxiety	p3f1q35a_v3v4 p3f1q35b_v3v4 p3f1q35c_v3v4 p3f1q35d_v3v4
PROMIS Depression
PROMIS Emotional Distress- Depression	p1f5q37a p1f5q37b p1f5q37c p1f5q37d p2f1q33a p2f1q33b p2f1q33c p2f1q33d
PROMIS Emotional Support	p3f1q33a_v3v4 p3f1q33b_v3v4 p3f1q33c_v3v4 p3f1q33d_v3v4
PROMIS Fatigue	p3f1q48e_v3v4 p3f1q57a_v3v4 p3f1q57b_v3v4 p3f1q57c_v3v4 p3f1q57d_v3v4
PROMIS Global Mental Health	p3f1q53d_v3v4 p3f1q54b_v3v4
PROMIS Satisfaction with Participation in Discretionary Social Activities

Neurodevelopment (16)

Neurodevelopment (16)

Data Element	Variables
Achenbach Child Behavior Checklist (CBCL)
Bayley Scale of Infant and Toddler Development
Behavior Rating Inventory of Executive Function (BRIEF)
California Verbal Learning Test
Children's Memory Scale
Connor's Continuous Performance Test II
Delis-Kaplan Executive Function System (D-KEFS)
NeuroQOL Cognitive Function	p1f5q35a p1f5q35b p1f5q35c p1f5q35d p1f5q36a p1f5q36b p1f5q36c p1f5q36d p2f1q34a p2f1q34b p2f1q34c p2f1q34d p2f1q35a p2f1q35b p2f1q35c p2f1q35d
Peabody Picture Vocabulary Test (PPVT)

Neuropsychological (4)

Neuropsychological (4)

Data Element	Variables
Adaptive Behavior Assessment System-II
Adverse Childhood Experience Questionnaire (ACE-Q)	p2f2q01 p2f2q01a p2f2q02 p2f2q02a
Beery Developmental Test of Visual-Motor Integration
Benton Tactile Form Perception Test
Mini Mental Status Examination (MMSE)
Oral Verbal Fluency Test
PROMIS Cognitive Function
Purdue Pegboard (SPA version)
Test of Everyday Attention (TEA)
Vineland Adaptive Behavior Summary
Wechsler Intelligence Scales
Wechsler Memory Scale
Wisconsin Card Sorting Test
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability

Pain (36)

Pain (36)

Data Element	Variables
ASCQ-Me Pain Episode	fp1f5q06 p1f5q10 p1f5q11 p1f5q7 p1f5q8 p1f5q9 p2f1q03 p2f1q04 p2f1q05 p2f1q07
ASCQ-Me Pain Impact	p1f5q12a p1f5q12b p1f5q13a p1f5q13b p2f1q08a p2f1q08b p2f1q09a p2f1q09b
ASCQ-Me Stiffness Impact	p3f1q65a_v3v4 p3f1q65b_v3v4 p3f1q65c_v3v4 p3f1q65d_v3v4 p3f1q65e_v3v4
Brief Pain Inventory (BPI)	p2f1q_duke3 p2f1q_duke4
Chronic Pain	p2f1q_duke1 p3f1q12_2_v3v4
PROMIS Neuropathic Pain Quality	p1f5q14a p2f1q10a
PROMIS Nociceptive Pain Quality	p1f5q14b p2f1q10b p2f1q11
PROMIS Pain Behavior
PROMIS Pain Interference	p3f1q09a2_v3v4 p3f1q09b2_v3v4 p3f1q09c2_v3v4 pf1q09d2_v3v4

Physical Function (0)

Physical Function (0)

Psychosocial (18)

Psychosocial (18)

Data Element	Variables
Experiences of Discrimination Scale	p3f1q48_a1_v3v4 p3f1q48_a2_v3v4 p3f1q48_b1_v3v4 p3f1q48_b2_v3v4 p3f1q48_c1_v3v4 p3f1q48_c2_v3v4 p3f1q48_d1_v3v4 p3f1q48_d2_v3v4 p3f1q48_e1_v3v4 p3f1q48_e2_v3v4 p3f1q48_f1_v3v4 p3f1q48_f2_v3v4 p3f1q48_g1_v3v4 p3f1q48_g2_v3v4 p3f1q48_h1_v3v4 p3f1q48_h2_v3v4 p3f1q48_i1_v3v4 p3f1q48_i2_v3v4
Family Environment Scale (FES)
Life Stressors and Social Resources Inventory - Youth (LISRES-Y)

Quality of Care (0)

Quality of Care (0)

Quality of Life (7)

Quality of Life (7)

Data Element	Variables
ASCQ-Me SCD Medical History Checklist
ASCQ-Me Sexual Health
Child Health Questionnaire (CHQ)
Ladder of Life
Pediatric Quality of Life Inventory Child Report (ages 13-18)
Pediatric Quality of Life Inventory Child Report (ages 8-12)
Pediatric Quality of Life Inventory Parent Report for Child (ages 13-18)
Pediatric Quality of Life Inventory Parent Report for Child (ages 8-12)
PROMIS Global Health
PROMIS Global Physical Health	p3f1q41_1a_v3v4 p3f1q41_1b_v3v4 p3f1q41_2b_v3v4
PROMIS Self-Efficacy for Managing Medications and Treatment	p2f1q38a p2f1q38b p2f1q38c p2f1q38d
SF-36 Health Survey

Sleep (4)

Sleep (4)

Data Element	Variables
ASCQ-Me Sleep Impact	p1f5q34a p1f5q34b p2f1q32a p2f1q32b
PROMIS Sleep Distrubance

Technology Support (0)

Technology Support (0)

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