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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
Data ElementVariables
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
Data ElementVariables
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)
Data ElementVariables
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
Data ElementVariables
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
Data ElementVariables
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)
Data ElementVariables
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
Data ElementVariables
ASCQ-Me Sleep Impact p1f5q34a
p1f5q34b
p2f1q32a
p2f1q32b
PROMIS Sleep Distrubance
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