Details - CureSickleCell

Study ID	1031
Name	Sickle Cell Disease Natural History Data Resource
Contact Email	byk@rti.org
Acronym	SCD NHDR
Period	2022-
Design	Longitudinal cohort study
Study PI	Tabitha Hendershot
Institution	RTI International
URL	https://curesicklecell-nhdr.rti.org/
CTGovID	NA
Funding Agency	NHLBI
Grant Number	OT3HL147798

Overview	The NHLBI initiated the Sickle Cell Disease Natural History Data Resource (SCD NHDR) to leverage existing SCD studies to build a data resource to provide phenotypic data on contemporaneous control cohorts for gene therapy trials and other studies. The potential uses of the NHDR are broad, including providing matched controls for clinical trials, observing a cohort of untreated patients as part of a natural history study, or conducting comparative effectiveness research on a subpopulation with selected co-morbidities or drug treatment profiles. The SCD NHDR includes two multi-center SCD longitudinal cohort studies with extensive annual clinical data and patient surveys, the Sickle Cell Disease Implementation Consortium (SCDIC-II) and the Globin Research Network for Data and Discovery (GRNDaD). The original SCDIC-I, initiated in 2017 and concluded in June 2022, enrolled over 2400 patients with SCD from 8 US treatment centers. The SCDIC-II reconsented 1220 of the SCDIC-I patients as well as enrolling an additional 450 new patients from the same 8 centers between September 2022 and October 2023, for a total of 1670 in SCDIC-II. Only two of the many GRNDaD centers are submitting data to the SCD NHDR for deposit into BDC (approximately 122 patients). Annual data submissions from the SCD NHDR to BDC began in 2024.
Focus Areas	1. Acute/Chronic Pain 2. Organ Function 3. Natural History
Outcomes	1. SCD Complications/Co-morbidities 2. SCD Treatment 3. Natural history of untreated cohort 4. 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	N/A
Contact Consent	Yes, with permission on consent
Genomic Data	No

Age Range	14-75 at enrollment
No. Participants	1670
Inclusion Criteria	1. At least 14 years of age at the time of consent 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. 4. Willing and cognitively able to give informed consent and complete the Patient Enrollment Survey 5. Available medical record for abstraction of clinical data
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. Received a curative therapy for SCD 4. No available medical record that documents SCD care

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Clinical status (155)

Behavior (8)

Concept	Variables
Substance Use	p3f1q72_v3v4 p3f1q73_v3v4 p3f1q74_v3v4 p3f1q75_v3v4 p3f1q76_v3v4 p3f1q77_v3v4 p3f1q78_v3v4 p3f1q80_v3v4

Blood (3)

Concept	Variables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease	p3f4q04 p3f4q04a p1f6q00_c

Cancer (1)

Concept	Variables
Cancer	p3f1q16m_v3v4

Cardiovascular (8)

Concept	Variables
Aneurysm
Cardiac Failure
Cardiovascular Problem	p2f1q16f p2f1q16g p3f4q40a_3___1 p3f4q46b_3___1 p3f4q78___1 p3f4q84___1
Heart Problem	p3f4q40b_3___1 p3f4q79___1

Digestive (31)

Concept	Variables
Gastrointestinal Problem	p3f4q104___1 p3f4q61_15dys p3f4q61_9dys p3f4q67 p3f4q67_4 p3f4q72 p3f4q72_4 p3f4q82___1
Hepatitis	p3f4q102___1 p3f4q103___1 p3f4q61_11dys p3f4q61_13dys p3f4q68 p3f4q68_4 p3f4q71 p3f4q71_4
Liver Problem	p2f1q16k p3f1q16k_v3v4 p3f4q100___1 p3f4q101___1 p3f4q105___1 p3f4q106___1 p3f4q61_17dys p3f4q61_19dys p3f4q61_7dys p3f4q66 p3f4q66_4 p3f4q74 p3f4q74_4 p3f4q75 p3f4q75_4

Endocrine (2)

Concept	Variables
Diabetes Mellitus	p2f1q16j p3f4q92___1
Endocrine Problem

Family MedHx (0)

General Health (0)

Genitourinary (4)

Concept	Variables
Genitourinary Problem
Kidney Problem	p2f1q16b p3f4q51___1 p3f4q65___1
Priapism	p3f4q70___1
Renal Dialysis History

Immune (4)

Concept	Variables
Fever
HIV Infection
Immune Problem	p3f4q85___1
Infection	p3f4q88___1 p3f4q89___1
Vaccination	p3f1q18b_v3v4

Lymphatic (6)

Concept	Variables
Sarcoidosis
Spleen Problem	p2f1q15 p3f1q17b_v3v4 p3f4q45b_4___1 p3f4q45b_5___1 p3f4q45c_3___1 p3f4q83___1

Medical Event (15)

Concept	Variables
Adverse event
Death	p1f7q03 p1f7q04 p1f7q05 p1f7q05a p1f7q05b p1f7q06 p1f7q06a1 p1f7q06a1_13 p1f7q06a1_14 p1f7q06a1_15 p1f7q06a2 p1f7q06a2_13 p1f7q06a2_14 p1f7q06a2_15 p1f7q07
Disability Status
Hospitalization
Medical Event
Serious Adverse Event

Medical History (4)

Concept	Variables
Medical History	p3f4q61_20dys p3f4q69 p3f4q69_4 p3f4q99___1

Mental Health (31)

Concept	Variables
Anxiety	p3f1q35a_v3v4 p3f1q35b_v3v4 p3f1q35c_v3v4 p3f1q35d_v3v4 p3f4q96___1
Depression	p2f1q33a p2f1q33b p2f1q33c p2f1q33d p2f1q33e p2f1q33f p2f1q33g p2f1q36a p2f1q36b p3f4q97___1
Emotional Health	p3f1q33a_v3v4 p3f1q33b_v3v4 p3f1q33c_v3v4 p3f1q33d_v3v4 p3f1q40a_v3v4 p3f1q40b_v3v4 p3f1q40c_v3v4 p3f1q40d_v3v4 p3f1q40e_v3v4 p3f1q40f_v3v4 p3f1q48e_v3v4 p3f1q57a_v3v4 p3f1q57b_v3v4 p3f1q57c_v3v4 p3f1q57d_v3v4
Mental status
Psychiatric Disorder	p3f4q98___1

Musculoskeletal (8)

Concept	Variables
Musculoskeletal Problem	p2f1q16d
Osteomyelitis
Osteonecrosis	p3f4q32a_3___1 p3f4q32b_3___1 p3f4q32c_3___1 p3f4q32d_2___1 p3f4q33___1
Rheumatic Diseases	p3f4q86___1 p3f4q87___1

Neurodevelopmental (4)

Concept	Variables
Behavior
Cognition	p2f1q35a p2f1q35b p2f1q35c p2f1q35d
Developmental
Motor
Sensation

Neurologic (10)

Concept	Variables
Meningitis
Neurologic Event	p3f4q77___1
Seizure	p3f4q58_3dys p3f4q64_4 p3f4q95___1
Stroke	p2f1q16h p3f4q38a_3___1 p3f4q38b_3___1 p3f4q38d_3___1 p3f4q76___1
Transient Ischemic Attack	p3f4q38c_3___1

Nutritional and Metabolic (1)

Concept	Variables
Nutritional and Metabolic	p3f4q93___1

Ocular (2)

Concept	Variables
Ocular Problem
Sickle Retinopathy	p2f1q16c p3f4q91___1

Oral (0)

Pain (2)

Concept	Variables
Abdominal Pain
Headache
Management	p2f1q11 p3f1q11_v3v4

Reproductive (0)

Respiratory (6)

Concept	Variables
Acute Chest Syndrome	p2f1q16a p3f4q80___1
Asthma	p2f1q16i p3f4q81___1
Lung Disease	p2f1q16e p3f4q46a_3___1
Other Respiratory Problem

Skin (3)

Concept	Variables
Skin Problem	p2f1q16l p3f1q16l_v3v4 p3f4q90___1

Sleep (2)

Concept	Variables
Sleep Problem	p2f1q32a p2f1q32b

Surgery History (0)

COVID-19 (5)

Diagnosis (2)

Concept	Variables
COVID-19	p3f1q16n_v3v4
Long COVID	p3f1q16o_v3v4
Symptoms
Test

Impact (0)

Treatment (1)

Concept	Variables
Hospitalization	p3f1q23b_v3v4

Vaccination (2)

Concept	Variables
Vaccination booster	p3f1q21b_v3v4
Vaccination ever	p3f1q19b_v3v4

Demographics (23)

Demographics (3)

Concept	Variables
Address
Age
Ethnic Group	p1f6q03
Gender	p1f6q04
Language
National Origin
Nuclear Family
Race	p1f6q02

Social Determinants of Health (SDoH) (19)

Concept	Variables
Community
Individual	p3f1q46_v3v4 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

Socioeconomic Status (1)

Concept	Variables
Annual Income
Education
Employment Status
Household
Insurance	p3f1q47_v3v4
Marital Status

Environmental Exposure (0)

Exposure (0)

Health Care (21)

Acute Care Utilization (15)

Concept	Variables
Facility Type	p1f11q12 p1f11q13
Provider Type	p1f11q01 p1f11q02 p1f11q03 p1f11q04 p1f11q05 p1f11q06 p1f11q07 p1f11q08 p1f11q09 p1f11q10 p1f11q11
Quality of Care
Visit	p1f11q12a p1f11q13a

Health Services (0)

Healthcare utilization (3)

Concept	Variables
Country of Care
Facility Type
Quality of Care	p2f1q39 p2f1q40 p2f1q40a

Hospitalization (3)

Concept	Variables
Final Diagnosis
Hospitalization	p1f11q14 p1f11q14a
ICU	p3f4q52a___1

SCD Management (0)

Imaging (87)

Angiogram (0)

Catheterization (12)

Concept	Variables
Right Heart Catheterization	p1f9c0a_dys p1f9q044 p1f9q045 p1f9q046 p1f9q047 p1f9q048 p1f9q049 p1f9q050 p1f9q051 p1f9qb0___1 p1f9qb0a_dys p1f9qc0___1

CT Scan (0)

Echocardiogram (47)

Concept	Variables
Echocardiogram	p1f10q04 p1f10q04_dtdys p1f9q001 p1f9q002 p1f9q002a p1f9q003 p1f9q004a p1f9q005 p1f9q006 p1f9q006a p1f9q006b p1f9q006c p1f9q006d p1f9q006e p1f9q006e_2 p1f9q007 p1f9q008 p1f9q009a p1f9q00f p1f9q010 p1f9q012 p1f9q014 p1f9q015 p1f9q015a p1f9q015c p1f9q017 p1f9q018 p1f9q019 p1f9q020 p1f9q021 p1f9q021a p1f9q022 p1f9q023 p1f9q024 p1f9q025 p1f9q026 p1f9q027 p1f9q028 p1f9q029 p1f9q030 p1f9q031 p1f9q033 p1f9q034 p1f9q035 p1f9q036 p1f9q037 p1f9q052

Electrocardiogram (ECG) (11)

Concept	Variables
Electrocardiogram (ECG)	p1f10q05 p1f10q05_dtdys p1f9q038 p1f9q039 p1f9q040 p1f9q041 p1f9q042_qt p1f9q042_qtc p1f9q043p p1f9q043r p1f9q043t

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (10)

Concept	Variables
Brain	p1f10q07 p1f10q07_dtdys p1f10q07b
Heart	p1f10q03 p1f10q03_dtdys p1f10q03b
Hip
Liver	p1f10q02 p1f10q02_dtdys p1f10q02b p1f10q02c

Nuclear Medicine Imaging (4)

Concept	Variables
Heart
Kidney
Liver
Spleen	p1f10q09 p1f10q09_dtdys p1f10q09b p1f10q09c

PET scan (0)

Transcranial Doppler (TCD) (3)

Concept	Variables
Brain	p1f10q08 p1f10q08_dtdys p1f10q08b

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (0)

Demographics (0)

Psychosocial (0)

Quality of Life (0)

Quality of Life (48)

Functional Status (21)

Concept	Variables
Behavior
Cognitive	p2f1q34a p2f1q34b p2f1q34c p2f1q34d
Mental Health	p3f1q53d_v3v4
Physical	p3f1q41_1b_v3v4 p3f1q41_2b_v3v4
SCD Management	p2f1q37 p2f1q38a p2f1q38b p2f1q38c p2f1q38d
Sleep/Fatigue
Social	p3f1q38c_v3v4 p3f1q38d_v3v4 p3f1q38e_v3v4 p3f1q39a_v3v4 p3f1q39b_v3v4 p3f1q39c_v3v4 p3f1q39d_v3v4 p3f1q39e_v3v4 p3f1q39f_v3v4

General Health (2)

Concept	Variables
General Health	p3f1q41_1a_v3v4 p3f1q54b_v3v4

Pain (25)

Concept	Variables
General Pain	p2f1q_duke1 p2f1q_duke3 p2f1q_duke4 p2f1q08a p2f1q08b p2f1q09a p2f1q09b p2f1q10a p2f1q10b p3f1q09a2_v3v4 p3f1q09b2_v3v4 p3f1q09c2_v3v4 p3f1q12_2_v3v4 p3f4q94___1 pf1q09d2_v3v4
Pain Attack	fp1f5q06 p2f1q03 p2f1q04 p2f1q05 p2f1q07
Skeletal and Joint Pain	p3f1q65a_v3v4 p3f1q65b_v3v4 p3f1q65c_v3v4 p3f1q65d_v3v4 p3f1q65e_v3v4

Tests (107)

Biopsy (3)

Concept	Variables
Biopsy	p1f10q01 p1f10q01_dtdys p1f10q01b

Blood (78)

Concept	Variables
Blood Differential Test	p1f2q10 p1f2q11 p1f2q12 p1f2q13
Blood Gases
Blood Smear
Blood Typing
Coagulation Test
Complete Blood Count	p1f2q1 p1f2q2 p1f2q4 p1f2q5 p1f2q6 p1f2q7 p1f2q8 p1f2q9
Comprehensive Metabolic Panel (CMP)	p1f2q1_1b p1f2q14 p1f2q15 p1f2q16 p1f2q17 p1f2q18 p1f2q19 p1f2q20 p1f2q21 p1f2q22 p1f2q23 p1f2q24 p1f2q25 p1f2q26 p1f2q26_1a p1f2q27 p1f2q28 p1f2q29 p1f2q3 p1f2q30 p1f2q31 p1f2q32 p1f2q33 p1f2q35 p1f2q36 p1f2q41 p1f2q42
Enzyme	p1f2q34
General
Hemoglobin Typing	p1f2q50 p1f2q50_1 p1f2q50_10 p1f2q50_2 p1f2q50_3 p1f2q50_4 p1f2q50_5 p1f2q50_6 p1f2q50_7 p1f2q50_8 p1f2q50_9 p1f2q51 p1f2q51_1 p1f2q51_10 p1f2q51_2 p1f2q51_3 p1f2q51_4 p1f2q51_5 p1f2q51_6 p1f2q51_7 p1f2q51_8 p1f2q51_9 p1f2q52 p1f2q52_1 p1f2q52_10 p1f2q52_2 p1f2q52_3 p1f2q52_4 p1f2q52_5 p1f2q52_6 p1f2q52_7 p1f2q52_8 p1f2q52_9
Iron	p1f2q37 p1f2q38 p1f2q39 p1f2q39_1a p1f2q40

Cardiovascular (2)

Concept	Variables
Cardiovascular Test	p1f10q06 p1f10q06_dtdys

Genitourinary (19)

Concept	Variables
Genitourinary Test
Urine Test	p1f2q43 p1f2q43_1 p1f2q43_1a p1f2q44 p1f2q44_1 p1f2q45 p1f2q45_1 p1f2q46 p1f2q46_1 p1f2q47 p1f2q47_1 p1f2q48 p1f2q48_1r p1f2q48_1r_2 p1f2q48_unit p1f2q49 p1f2q49_1r p1f2q49_1r_2 p1f2q49_unit

Immune (0)

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (0)

Physical Exam (2)

Concept	Variables
Abdomen
Anthropometrics	p1f9q00c
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs	p1f9q00d

Reproductive (0)

Respiratory (3)

Concept	Variables
Pulmonary Function Test	p1f10q10 p1f10q10_dtdys p1f10q10b
Respiratory Test

Therapeutics (92)

Medication (74)

Concept	Variables
Antibiotics
Asthma
Blood Medication History
Cardiovascular	p2f1q29 p2f1q29a
Compliance
Current Medication
Depression Medication History
Hydroxyurea	p2f1q17 p2f1q18 p2f1q19 p2f1q19a p2f1q20 p2f1q21 p2f1q22 p2f1q22a
Medication	p2f1q28 p2f1q30 p2f1q30a
Neurologic Medication History
Pain	p2f1q01 p2f1q02 p2f1q02a p2f1q02b
SCD Medication	p2f1q14 p2f1q23 p2f1q24 p2f1q25 p2f1q25a p2f1q26 p2f1q27 p2f1q27a p2f1q31 p3f1q31_v4 p3f1q32_v4 p3f1q33_v4 p3f1q34_v4___1 p3f1q34_v4___2 p3f1q34_v4___3 p3f1q34_v4___4 p3f1q34_v4___5 p3f1q34_v4___6 p3f1q34_v4___7 p3f1q34_v4___8 p3f1q35_v4 p3f1q36_v4 p3f1q37_v4 p3f1q38_v4 p3f1q39_v4___1 p3f1q39_v4___2 p3f1q39_v4___3 p3f1q39_v4___4 p3f1q39_v4___5 p3f1q39_v4___6 p3f1q39_v4___7 p3f4q12b_adys p3f4q12b_b1___1 p3f4q12b_bdys p3f4q12b_c p3f4q12b_c1 p3f4q12b_c2 p3f4q12b_d p3f4q13b2 p3f4q13b2_b1___1 p3f4q13b2_bdys p3f4q13b2_c p3f4q13b2_c1 p3f4q13b2_c2 p3f4q13b2_d p3f4q13b3 p3f4q13bdys p3f4q14_b p3f4q14b p3f4q14b_2 p3f4q14b_adys p3f4q14b_b1___1 p3f4q14b_bdys p3f4q14b_c p3f4q14b_c1 p3f4q14b_c2 p3f4q14b_d
Sildenafil
Supplements

Surgery (0)

Transfusion (11)

Concept	Variables
Blood Transfusion	p1f11q15 p1f11q15a p1f11q16 p1f11q16a p1f11q16a p2f1q12 p2f1q13 p3f1q13_v3v4 p3f1q14_v3v4 p3f4q52c___1 p3f4q52d___1
Chronic Transfusion
Transfusion Complications

Transplantation (3)

Concept	Variables
Conditioning
Transplantation	p3f4q01 p3f4q01dys p3f4q36a_3b___1

Treatment (4)

Concept	Variables
Discontinuation
Oxygen
Treatment	p3f4q52b___1 p3f4q52e___1 p3f4q52f___1 p3f4q73

Study Publications

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Mental Health (39)

Concept	Variables
ASCQ-Me Emotional Impact	p2f1q33e p2f1q33f
ASCQ-Me Social Functioning	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	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	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 (8)

Concept	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	p2f1q34a p2f1q34b p2f1q34c p2f1q34d p2f1q35a p2f1q35b p2f1q35c p2f1q35d
Peabody Picture Vocabulary Test (PPVT)

Neuropsychological (0)

Pain (25)

Concept	Variables
ASCQ-Me Pain Episode	fp1f5q06 p2f1q03 p2f1q04 p2f1q05 p2f1q07
ASCQ-Me Pain Impact	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	p2f1q10a
PROMIS Nociceptive Pain Quality	p2f1q10b p2f1q11
PROMIS Pain Behavior
PROMIS Pain Interference	p3f1q09a2_v3v4 p3f1q09b2_v3v4 p3f1q09c2_v3v4 pf1q09d2_v3v4

Physical Function (0)

Psychosocial (18)

Concept	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 Life (7)

Concept	Variables
ASCQ-Me SCD Medical History Checklist
ASCQ-Me Sexual Health
Child Health Questionnaire (CHQ)
Ladder of Life
Pediatric Quality of Life Inventory (PedsQL) (ages 1-12ms)
Pediatric Quality of Life Inventory (PedsQL) (ages 13-24ms)
Pediatric Quality of Life Inventory (PedsQL) (ages 2-4ys)
Pediatric Quality of Life Inventory (PedsQL) (ages 5-7)
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 (2)

Concept	Variables
ASCQ-Me Sleep Impact	p2f1q32a p2f1q32b
PROMIS Sleep Distrubance

Technology Support (0)

Study Documentation Select All	1. SCDIC-II_Registry_Protocol 2. SCDICII_CardiacProcedureForm_yr1_DD 3. SCDICII_HealthCareUtilization_DD 4. SCDICII_LabForm_yr1_DD 5. SCDICII_MRA_yr1Enrol_DD 6. SCDICII_MRA_yr1FU_DD 7. SCDICII_Procedures_yr1_DD 8. SCDICII_ptregistration_DD 9. SCDICII_PtSurvey_yr1_DD
Forms Select All	1. Cardiac_Procedures_SCDIC-II 2. Enrollment_Healthcare_Utilization_SCDIC-II 3. FU_Patient_Medical_Record_Abstraction_SCDIC-II 4. FU_Patient_Survey_SCDIC-II 5. Historical_Procedures Form_SCDIC-II 6. Laboratory_Form_SCDIC-II 7. New_Patient_Medical_Record_Abstraction_SCDIC-II 8. New_Patient_Survey_SCDIC-II 9. SCDIC-II Patient Survey PRO Scales and Q numbers 10. Patient_Registration 11. Registry_Off_Study_Form

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