Details - CureSickleCell

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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Clinical status (405)

Behavior (8)

Data Element	Variables
Substance Use	p3f1q72_v3v4 p3f1q73_v3v4 p3f1q74_v3v4 p3f1q75_v3v4 p3f1q76_v3v4 p3f1q77_v3v4 p3f1q78_v3v4 p3f1q80_v3v4

Blood (8)

Data Element	Variables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease	p1f1q03 p1f1q03a p1f5q4 p1f6q00_c p3f4q04 p3f4q04a SCD_DIAG SCD_TYPE

Cancer (6)

Data Element	Variables
Cancer	p1f1q62 p1f1q62a1_1 p1f1q62a1_2 p1f1q62a1_3 p1f1q62a1_4 p3f1q16m_v3v4

Cardiovascular (18)

Data Element	Variables
Aneurysm
Cardiac Failure	p1f5q28f
Cardiovascular Problem	p1f1q46 p1f1q46_1 p1f1q46b p1f1q46b_1 p1f5q28g p2f1q16f p2f1q16g p3f4q40a_3___1 p3f4q46b_3___1 p3f4q78___1 p3f4q84___1
Heart Problem	p1f1q40b p1f1q40b_1 p1f1q41 p1f1q41_1 p3f4q40b_3___1 p3f4q79___1

Digestive (33)

Data Element	Variables
Gastrointestinal Problem	p1f1q44 p1f1q44_1 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 (5)

Data Element	Variables
Diabetes Mellitus	p1f1q56 p1f1q56_1 p1f5q28j p2f1q16j p3f4q92___1
Endocrine Problem

Family MedHx (0)

General Health (0)

Genitourinary (42)

Data Element	Variables
Genitourinary Problem	p1f8label2 p1f8q02_a p1f8q02_a2 p1f8q02_b p1f8q02_b2 p1f8q02_c p1f8q02_d p1f8q02_e p1f8q02_e2
Kidney Problem	p1f1q35 p1f1q35_1 p1f1q36 p1f1q36_1 p1f1q36a p1f1q36a_1 p1f5q28b p1f8label1 p1f8q01_a p1f8q01_a2 p1f8q01_b p1f8q01_b2 p1f8q01_c p1f8q01_d p1f8q01_e p1f8q01_e2 p1f8q04a p1f8q04b p1f8q04e p1f8q04e_a p1f8q04e_b p1f8q04f p1f8q04f_a p1f8q04f_c p2f1q16b p3f4q51___1 p3f4q65___1
Priapism	p1f1q37 p1f1q37_1 p1f4q10 p3f4q70___1
Renal Dialysis History	p1f8q04c p1f8q04d

Immune (9)

Data Element	Variables
Fever
HIV Infection
Immune Problem	p1f1q47 p1f1q47_1 p3f4q85___1
Infection	p1f1q50 p1f1q50_1 p1f1q51 p3f4q88___1 p3f4q89___1
Vaccination	p3f1q18b_v3v4

Lymphatic (15)

Data Element	Variables
Sarcoidosis
Spleen Problem	p1f1q45 p1f1q45_1 p1f1q45a p1f1q45a_1 p1f1q45b p1f1q45b_1 p1f1q45c p1f1q45c_1 p1f5q30 p2f1q15 p3f1q17b_v3v4 p3f4q45b_4___1 p3f4q45b_5___1 p3f4q45c_3___1 p3f4q83___1

Medical Event (15)

Data Element	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 (18)

Data Element	Variables
Medical History	p1f1q52 p1f1q52_1 p1f1q52a p1f1q52a_1 p1f1q52b p1f1q52b_1 p1f1q52c p1f1q52c_1 p1f1q52d p1f1q52d_1 p1f1q52e p1f1q52e_1 p1f1q52f p1f1q52f_1 p3f4q61_20dys p3f4q69 p3f4q69_4 p3f4q99___1

Mental Health (49)

Data Element	Variables
Anxiety	p1f1q59 p1f1q59_1 p3f1q35a_v3v4 p3f1q35b_v3v4 p3f1q35c_v3v4 p3f1q35d_v3v4 p3f4q96___1
Depression	p1f1q60 p1f1q60_1 p1f5q38 p1f5q39 p1f5q39a p1f5q39b p2f1q33a p2f1q33b p2f1q33c p2f1q33d p2f1q33e p2f1q33f p2f1q33g p2f1q36a p2f1q36b p3f4q97___1
Emotional Health	p1f5q37a p1f5q37b p1f5q37c p1f5q37d p1f5q37e p1f5q37f p1f5q37g 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	p1f1q61 p1f1q61_1 p1f1q61_2 p3f4q98___1

Musculoskeletal (23)

Data Element	Variables
Musculoskeletal Problem	p1f5q28d p2f1q16d
Osteomyelitis	p1f1q34 p1f1q34_1
Osteonecrosis	p1f1q32 p1f1q32_1 p1f1q32a p1f1q32a_1 p1f1q32b p1f1q32b_1 p1f1q32c p1f1q32c_1 p3f4q32a_3___1 p3f4q32b_3___1 p3f4q32c_3___1 p3f4q32d_2___1 p3f4q33___1
Rheumatic Diseases	p1f1q48 p1f1q48_1 p1f1q49 p1f1q49_1 p3f4q86___1 p3f4q87___1

Neurodevelopmental (12)

Data Element	Variables
Behavior
Cognition	p1f5q35a p1f5q35b p1f5q35c p1f5q35d p1f5q36a p1f5q36b p1f5q36c p1f5q36d p2f1q35a p2f1q35b p2f1q35c p2f1q35d
Developmental
Motor
Sensation

Neurologic (23)

Data Element	Variables
Meningitis
Neurologic Event	p1f1q38a p1f1q38a_1 p1f1q38b p1f1q38b_1 p1f1q39 p1f1q39_1 p3f4q77___1
Seizure	p3f4q58_3dys p3f4q64_4 p3f4q95___1
Stroke	p1f1q38 p1f1q38_1 p1f1q38d p1f1q38d_1 p1f5q28h p2f1q16h p3f4q38a_3___1 p3f4q38b_3___1 p3f4q38d_3___1 p3f4q76___1
Transient Ischemic Attack	p1f1q38c p1f1q38c_1 p3f4q38c_3___1

Nutritional and Metabolic (3)

Data Element	Variables
Nutritional and Metabolic	p1f1q57 p1f1q57_1 p3f4q93___1

Ocular (5)

Data Element	Variables
Ocular Problem
Sickle Retinopathy	p1f1q55 p1f1q55_1 p1f5q28c p2f1q16c p3f4q91___1

Oral (0)

Pain (44)

Data Element	Variables
Abdominal Pain
General Pain	p1f1q58 p1f1q58_1 p1f5q12a p1f5q12b p1f5q13a p1f5q13b p1f5q14a p1f5q14b p2f1q_duke1 p2f1q_duke3 p2f1q_duke4 p2f1q08a p2f1q08b p2f1q09a p2f1q09b p2f1q10a p2f1q10b p2f1q11 p3f1q12_2_v3v4 p3f4q94___1
Headache
Management	p1f1q15_2 p1f1q15_3 p1f1q16_2 p1f1q16_3 p1f1q17_3 p1f1q17_4 p3f1q11_v3v4
Pain Attack	fp1f5q06 p1f5q10 p1f5q11 p1f5q7 p1f5q8 p1f5q9 p2f1q03 p2f1q04 p2f1q05 p2f1q07
Skeletal and Joint Pain	p1f1q33 p1f1q33_1 p3f1q65a_v3v4 p3f1q65b_v3v4 p3f1q65c_v3v4 p3f1q65d_v3v4 p3f1q65e_v3v4

Reproductive (35)

Data Element	Variables
Birth Outcome
Gestational Age
Menstruation
Pregnancy	p1f3q01 p1f3q02 p1f3q03_1 p1f3q04_1 p1f3q08_1 p1f3q09_1 p1f3q09a_1r p1f3q10_1 p1f3q11_1 p1f3q11a_1 p1f3q12_1 p1f3q12a_1 p1f3q13 p1f3q14 p1f3q15 p1f3q16 p1f3q17 p1f4q03_1 p1f4q04_1 p1f4q07a_1r p1f4q08_1 p1f4q09_1 p1f4q09a_1
Reproductive Behavior	p1f3q05_1 p1f3q06_1 p1f3q07_1 p1f4q01 p1f4q02 p1f4q05_1 p1f4q06_1 p1f4q07_1 p1f4q11 p1f4q12 p1f4q13 p1f4q14

Respiratory (22)

Data Element	Variables
Acute Chest Syndrome	p1f1q42 p1f1q42_1 p1f1q42_2 p2f1q16a p3f4q80___1
Asthma	p1f1q43 p1f1q43_1 p1f5q28i p2f1q16i p3f4q81___1
Lung Disease	p1f1q40 p1f1q40_1 p1f1q40a p1f1q40a_1 p1f1q46a p1f1q46a_1 p1f5q28a p1f5q28e p2f1q16e p3f4q46a_3___1
Other Respiratory Problem	p1f1q53 p1f1q53_1

Skin (6)

Data Element	Variables
Skin Problem	p1f1q54 p1f1q54_1 p1f5q29 p2f1q16l p3f1q16l_v3v4 p3f4q90___1

Sleep (4)

Data Element	Variables
Sleep Problem	p1f5q34a p1f5q34b p2f1q32a p2f1q32b

Surgery History (2)

Data Element	Variables
Cardiovascular
Digestive
Genitourinary
Lymphatic	p1f1q45d p1f1q45d_1
Musculoskeletal
Ocular
Respiratory
Surgery History

COVID-19 (57)

Diagnosis (17)

Data Element	Variables
COVID-19	p3f1q16n_v3v4 cov19_q1 cov19_q5 cov19_q6
Long COVID	p3f1q16o_v3v4
Symptoms	cov19_q13 cov19_q13a cov19_q13b cov19_q14 cov19_q15 cov19_q15a cov19_q7 cov19_q8 cov19_q8a
Test	cov19_q2 cov19_q3 cov19_q4

Impact (31)

Data Element	Variables
Behaviors and Risks	cov19_q20a cov19_q20b cov19_q20c cov19_q20d cov19_q20e cov19_q20f
Healthcare	cov19_q16 cov19_q17 cov19_q18a cov19_q18b cov19_q18c cov19_q18d cov19_q18e cov19_q18f cov19_q18g cov19_q19a cov19_q19b cov19_q19c cov19_q19d cov19_q19e cov19_q19f cov19_q19g
Psychosocial and Mental Health	cov19_q21a cov19_q21b cov19_q21c cov19_q21d cov19_q21e cov19_q21f cov19_q21g cov19_q21h cov19_q21i

Treatment (7)

Data Element	Variables
Hospitalization	p3f1q23b_v3v4 cov19_q10 cov19_q11 cov19_q12 cov19_q12a cov19_q12b cov19_q9

Vaccination (2)

Data Element	Variables
Vaccination booster	p3f1q21b_v3v4
Vaccination ever	p3f1q19b_v3v4

Demographics (41)

Demographics (8)

Data Element	Variables
Address
Age	p1f5q3
Ethnic Group	p1f5q41 p1f6q03
Gender	p1f5q40 p1f6q04
Language	p1f5q43
National Origin
Nuclear Family
Race	p1f5q42 p1f6q02

Social Determinants of Health (SDoH) (23)

Data Element	Variables
Community
Individual	p2f2q01 p2f2q01a p2f2q02 p2f2q02a 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 (10)

Data Element	Variables
Annual Income	p1f5q46
Education	p1f5q47
Employment Status	p1f5q48 p1f5q48a
Household	p1f5q45a p1f5q45b
Insurance	p1f1q63 p1f1q63a p3f1q47_v3v4
Marital Status	p1f5q44

Environmental Exposure (0)

Exposure (0)

Health Care (43)

Acute Care Utilization (33)

Data Element	Variables
Facility Type	p1f11q12 p1f11q13 p1f1q15 p1f1q16 p1f1q17
Provider Type	p1f11q01 p1f11q02 p1f11q03 p1f11q04 p1f11q05 p1f11q06 p1f11q07 p1f11q08 p1f11q09 p1f11q10 p1f11q11 p1f1q18 p1f1q19 p1f1q20 p1f1q21 p1f1q22 p1f1q23 p1f1q24 p1f1q25 p1f1q26 p1f1q27 p1f5q5 p1f5q5r
Quality of Care
Visit	p1f11q12a p1f11q13a p1f1q04a_1 p1f1q04a_2 p1f4q04a_1a

Healthcare utilization (6)

Data Element	Variables
Country of Care
Facility Type
Quality of Care	p1f5q32 p1f5q33 p1f5q33a p2f1q39 p2f1q40 p2f1q40a

Health Services (0)

Hospitalization (4)

Data Element	Variables
Final Diagnosis
Hospitalization	p1f11q14 p1f11q14a p1f1q17_2
ICU	p3f4q52a___1

SCD Management (0)

Imaging (144)

Angiogram (0)

Catheterization (12)

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

CT Scan (0)

Echocardiogram (91)

Data Element	Variables
Echocardiogram	p1f10q04 p1f10q04_dtdys p1f9label1 p1f9label2 p1f9label3c p1f9label8_2 p1f9label8_3 p1f9label8_4 p1f9label8_5 p1f9label9_2 p1f9label9_2b p1f9label9_3 p1f9q001 p1f9q002 p1f9q002a p1f9q003 p1f9q004a p1f9q005 p1f9q006 p1f9q006a p1f9q006b p1f9q006c p1f9q006d p1f9q006e p1f9q006e_2 p1f9q007 p1f9q008 p1f9q009a p1f9q00b p1f9q00f p1f9q01 p1f9q010 p1f9q012 p1f9q014 p1f9q015 p1f9q015a p1f9q015c p1f9q017 p1f9q018 p1f9q019 p1f9q02 p1f9q020 p1f9q021 p1f9q021a p1f9q022 p1f9q023 p1f9q024 p1f9q025 p1f9q026 p1f9q027 p1f9q028 p1f9q029 p1f9q03 p1f9q03_a p1f9q03_b p1f9q030 p1f9q031 p1f9q033 p1f9q034 p1f9q035 p1f9q036 p1f9q037 p1f9q04 p1f9q04_a p1f9q05 p1f9q05_a p1f9q052 p1f9q06 p1f9q06_a p1f9q06_a_na p1f9q06_b p1f9q06_b_na p1f9q07 p1f9q07_a p1f9q07_b p1f9q08 p1f9q08_a p1f9q08_b1 p1f9q08_b1b p1f9q08_b2 p1f9q08_b3 p1f9q08_b3b p1f9q08_b4 p1f9q08_b4b p1f9q09 p1f9q09_a p1f9q09_b1 p1f9q09_b2 p1f9q09_b3 p1f9q10 p1f9q10_a

Electrocardiogram (ECG) (24)

Data Element	Variables
Electrocardiogram (ECG)	p1f10q05 p1f10q05_dtdys p1f9q038 p1f9q039 p1f9q040 p1f9q041 p1f9q042_qt p1f9q042_qtc p1f9q043p p1f9q043r p1f9q043t p1f9q11 p1f9q11_a p1f9q11_b p1f9q12_a p1f9q12_b p1f9q13_a p1f9q13_b p1f9q14_a p1f9q14_b p1f9q15_a p1f9q15_b p1f9q16_a p1f9q16_b

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (10)

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

Nuclear Medicine Imaging (4)

Data Element	Variables
Heart
Kidney
Liver
Spleen	p1f10q09 p1f10q09_dtdys p1f10q09b p1f10q09c

PET scan (0)

Transcranial Doppler (TCD) (3)

Data Element	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 (27)

General Health (4)

Data Element	Variables
General Health	p3f1q41_1a_v3v4 p3f1q41_1b_v3v4 p3f1q53d_v3v4 p3f1q54b_v3v4

Pain (4)

Data Element	Variables
Pain	pf1q09d2_v3v4 p3f1q09a2_v3v4 p3f1q09b2_v3v4 p3f1q09c2_v3v4

Patient Functioning (14)

Data Element	Variables
Cognitive Functioning	p2f1q34a p2f1q34b p2f1q34c p2f1q34d
Emotional Functioning
Physical Functioning	p3f1q41_2b_v3v4
School Functioning
Social Functioning	p3f1q38c_v3v4 p3f1q38d_v3v4 p3f1q38e_v3v4 p3f1q39a_v3v4 p3f1q39b_v3v4 p3f1q39c_v3v4 p3f1q39d_v3v4 p3f1q39e_v3v4 p3f1q39f_v3v4

SCD (5)

Data Element	Variables
SCD Impact
SCD Management	p2f1q37 p2f1q38a p2f1q38b p2f1q38c p2f1q38d

Tests (136)

Biopsy (3)

Data Element	Variables
Biopsy	p1f10q01 p1f10q01_dtdys p1f10q01b

Blood (83)

Data Element	Variables
Blood Differential Test	p1f2q10 p1f2q11 p1f2q12 p1f2q13
Blood Gases	p1f1q11
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 p1f8label5 p1f8q03a p1f8q03b
Enzyme	p1f2q34
General
Hemoglobin Typing	p1f1q05 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 (17)

Data Element	Variables
Cardiovascular Test	p1f10q06 p1f10q06_dtdys p1f9q17_1 p1f9q17_a p1f9q17_b p1f9q18_a p1f9q18_b p1f9q19_a p1f9q19_b p1f9q20_a p1f9q20_b p1f9q21_a p1f9q21_b p1f9q22_a p1f9q22_b p1f9q23_a p1f9q23_b

Genitourinary (19)

Data Element	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 (11)

Data Element	Variables
Abdomen
Anthropometrics	p1f1q06 p1f1q07 p1f9q00c
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs	p1f1q08 p1f1q09 p1f1q10 p1f1q12 p1f1q12_1 p1f1q12_2 p1f1q12_3 p1f9q00d

Reproductive (0)

Respiratory (3)

Data Element	Variables
Pulmonary Function Test	p1f10q10 p1f10q10_dtdys p1f10q10b
Respiratory Test

Therapeutics (144)

Medication (95)

Data Element	Variables
Antibiotics
Asthma
Blood Medication History
Cardiovascular	p2f1q29 p2f1q29a
Compliance
Current Medication
Depression Medication History
Hydroxyurea	p1f1q13 p1f1q13a p1f1q13b p1f1q13c p1f1q13c1 p1f1q13d p1f1q13d_2 p1f5q15 p1f5q16 p1f5q16a p1f5q17 p1f5q18 p1f5q19 p1f5q19a p1f5q20 p1f5q21 p1f5q22 p1f5q22a p2f1q17 p2f1q18 p2f1q19 p2f1q19a p2f1q20 p2f1q21 p2f1q22 p2f1q22a
Medication	p1f1q14 p1f5q31_1 p2f1q28 p2f1q30 p2f1q30a
Neurologic Medication History
Pain	p1f5q6 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 (42)

Data Element	Variables
Blood Transfusion	p1f11q15 p1f11q15a p1f11q16 p1f11q16a p1f11q16a p1f1q28 p1f1q28_1 p1f1q28_2 p1f1q28_3 p1f1q28_4 p1f1q28_5 p1f1q30 p1f1q30_1 p1f1q30_2 p1f1q30_3 p1f1q30_4 p1f1q30_5 p1f5q23 p1f5q24 p1f5q25 p1f5q26 p1f5q27 p2f1q12 p2f1q13 p3f1q13_v3v4 p3f1q14_v3v4 p3f4q52c___1 p3f4q52d___1
Chronic Transfusion	p1f1q29 p1f1q29_1 p1f1q29_2 p1f1q29_3 p1f1q29_4 p1f1q29_5 p1f1q29_6 p1f1q31 p1f1q31_1 p1f1q31_2 p1f1q31_3 p1f1q31_4 p1f1q31_5 p1f1q31_6
Transfusion Complications

Transplantation (3)

Data Element	Variables
Conditioning
Transplantation	p3f4q01 p3f4q01dys p3f4q36a_3b___1

Treatment (4)

Data Element	Variables
Discontinuation
Oxygen
Treatment	p3f4q52b___1 p3f4q52e___1 p3f4q52f___1 p3f4q73

Study Publications

Open All Close All

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)

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)

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 (27)

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)
PROMIS Neuropathic Pain Quality	p1f5q14a p2f1q10a
PROMIS Nociceptive Pain Quality	p1f5q14b p2f1q10b
PROMIS Pain Behavior
PROMIS Pain Interference

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)

Physical Function (0)

Quality of Care (0)

Quality of Life (6)

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_1b_v3v4 p3f1q41_2b_v3v4
PROMIS Self-Efficacy for Managing Medications and Treatment	p2f1q38a p2f1q38b p2f1q38c p2f1q38d
SF-36 Health Survey

Sleep (4)

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

Technology Support (0)

Study Documentation Select All	1. Sickle_Cell_Disease_Patient_Registry_Protocol 2. SCDIC-II_Registry_Protocol 3. SCDICII_CardiacProcedureForm_yr1_DD 4. SCDICII_HealthCareUtilization_DD 5. SCDICII_LabForm_yr1_DD 6. SCDICII_MRA_yr1Enrol_DD 7. SCDICII_MRA_yr1FU_DD 8. SCDICII_Procedures_yr1_DD 9. SCDICII_ptregistration_DD 10. SCDICII_PtSurvey_yr1_DD
Forms Select All	1. Medical_Record_Abstraction 2. Laboratory_Reporting 3. Pregnancy_Conception–Female 4. Pregnancy_Conception–Males 5. Patient_Enrollment_Survey 6. Patient_Registration 7. Registry_Off_Study_Form 8. Renal_Form 9. Pulmonary_hypertension_LV_dysfunction 10. Patient Follow-up 1&2 Survey 11. Patient Follow-up 3&4 Survey 12. COVID Impact Survey 13. Adverse Childhood Experience Questionnaire (ACE-Q) 14. Cardiac_Procedures_SCDIC-II 15. Enrollment_Healthcare_Utilization_SCDIC-II 16. FU_Patient_Medical_Record_Abstraction_SCDIC-II 17. FU_Patient_Survey_SCDIC-II 18. Historical_Procedures Form_SCDIC-II 19. Laboratory_Form_SCDIC-II 20. New_Patient_Medical_Record_Abstraction_SCDIC-II 21. New_Patient_Survey_SCDIC-II 22. SCDIC-II Patient Survey PRO Scales and Q numbers

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Study Publications