Metadata Catalog

Study Detail

Study ID	1007
Name	Sickle Cell Clinical Research and Intervention Program
Contact Email	jane.hankins@stjude.org
Acronym	SCCRIP
Period	2014 -
Design	Lifespan cohort study
Study PI	Jane S. Hankins
Institution	St. Jude Children's Research Hospital
URL	https://www.stjude.org/research/clinical-trials/sccrip-hematological-disorder.html
CTGovID	NA
Funding Agency	St. Jude Children's Research Hospital
Grant Number	1U01HL133996-01

Overview	The purpose of this research study is to collect data on sickle cell disease participants from birth to young adulthood. With these data, researchers will better understand problems caused by sickle cell disease both in children and in adults. They will also look at long term effects of current treatments, and use these data as a building block for future research.
Focus Areas	1. To determine the incidence, prevalence, and severity of SCD complications and adverse health conditions within the SCD cohort during five stages of development: the newborn period (birth to 6 months), the infant/pre-school stage (ages 6 months to 6 years), the early school stage (ages 6 to 12 years), the adolescent stage (ages 12 to 18 years), and the years of transition into young adulthood (ages 18 to 25 years). 2. To identify and evaluate risk factors for premature mortality and long-term morbidity in patients with SCD, including those related to disease-modifying therapies, end-organ damage, genetics, neurocognitive deficits, psychosocial factors, and behavioral causes. 3. To investigate the long-term effects of hydroxyurea and other therapies on preservation of organ function, growth and development, and frequency and severity of disease complications, and their long-term medical, neurocognitive, and psychosocial toxicities. 4. To determine the functional aspects of the Transition to Adult Care Program within a clinical research cohort by evaluating disease specific health literacy and readiness in relation to healthcare utilization during adult care.
Outcomes	1. To establish a longitudinal clinical cohort of patients with sickle cell disease (SCD) to serve as a research resource to facilitate evaluation of health outcomes in SCD from pediatric care into adulthood. 2. To facilitate the collection of biological samples from patients with SCD to be used in future studies investigating genetic and epigenetic contributions to disease severity, response to treatment, and morbidity and mortality.

Data Location	St. Jude Children's Research Hospital
Biospecimen Available	DNA; Plasma; Urine; Cell;
Data Consent	Access requests from non-SCCRIP investigators for combined genetic and phenotypic data for hypothesis-driven research may be approved after completion of a concept proposal
Biospecimen Consent	Future research with subjects’ biospecimens and the potential risks to loss of privacy
Contact Consent	Yes, with permission on consent
Genomic Data	No

Age Range	0.5-99
No. Participants	1084
Inclusion Criteria	Participant has a diagnosis of Sickle Cell Disease of any genotype
Exclusion Criteria	Participant does not have a diagnosis of Sickle Cell Disease of any genotype

Study Documentation Select All
Forms Select All	1. SCCRIP-Data-Tables-2017 2. SCCRIP-CRF-Final-2019

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Clinical status (81)

Behavior (0)

Blood (5)

Concept	Variables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease	DX DX DX DX Phase_Description

Cancer (0)

Cardiovascular (1)

Concept	Variables
Aneurysm
Cardiac Failure
Cardiovascular Problem	Fibrosa_Thickness
Heart Problem

Digestive (0)

Endocrine (0)

Family MedHx (0)

General Health (0)

Genitourinary (6)

Concept	Variables
Genitourinary Problem
Kidney Problem	AGE_Y_CKD CKD CKD_CKD_eGFR CKD_DT CKD_MicroAlb CKD_TM
Priapism
Renal Dialysis History

Immune (0)

Lymphatic (0)

Medical Event (5)

Concept	Variables
Adverse event
Death	DeathDt DeathCause SCDrelated
Disability Status
Hospitalization	Q13 Q17
Medical Event
Serious Adverse Event

Medical History (0)

Mental Health (0)

Musculoskeletal (0)

Neurodevelopmental (44)

Concept	Variables
Behavior	briefSelfBRI_t briefSelfEC_t briefSelfGEC_t briefSelfInhibit_t briefSelfInitiate_t briefSelfMI_t briefSelfOoM_t briefSelfPO_t briefSelfShift_t briefSelfSM_t briefSelfTM_t briefSelfWM_t
Cognition	beeryVMI_standard bsiAnx_t bsiDep_t bsiGSI_t bsiHostility_t bsiIS_t bsiOC_t bsiPA_t bsiPI_t bsiPSDI_t bsiPST_t bsiPsych_t bsiSom_t cptiiiCommissions_t cptiiiDetectability_t cptiiiHitRT_t cptiiiHitRTBC_t cptiiiHitRTIChange_t cptiiiHitRTStandErr_t cptiiiOmissions_t cptiiiPerseverations_t cptiiiVariability_t dkefsCWIcn_scaled dkefsCWIcnTotErr_percentile dkefsCWIinhibition_scaled dkefsCWIinhibitionTotErr_scaled dkefsTMNumLetSeq_scaled dkefsTMNumLetSeqErr_scaled dkefsTMNumSeq_scaled dkefsVFcategoryTotal_scaled dkefsVFLetterTotal_scaled Iqmeasure
Developmental
Motor
Sensation

Neurologic (0)

Nutritional and Metabolic (0)

Ocular (0)

Oral (0)

Pain (2)

Concept	Variables
Abdominal Pain
Headache
Management	SCD_PAIN_MANAGEMENT_CONTROL_1 SCD_PAIN_MANAGEMENT_CONTROL_2

Reproductive (0)

Respiratory (0)

Skin (0)

Sleep (16)

Concept	Variables
Sleep Problem	AGE_SlepDisorder N1_Sleep_M N1_Sleep_P N2_Sleep_M N2_Sleep_P N3_Sleep_M N3_Sleep_P Obstructive_AHI Oxy_desaturation Percent_oxygeon PLMI PLMIA REM_Sleep_M REM_Sleep_P Resp_Arousal_Index Slep_efficiency

Surgery History (2)

Concept	Variables
Cardiovascular
Digestive
Genitourinary
Lymphatic	His_adenoidectomy His_tonsillectomy
Musculoskeletal
Ocular
Respiratory
Surgery History

COVID-19 (0)

Diagnosis (0)

Impact (0)

Treatment (0)

Vaccination (0)

Demographics (46)

Demographics (15)

Concept	Variables
Address	City Country State Street Zip_code
Age	Adult_CRF Age_2019 AGE_CRF AssessmentAge DOB TransAdult TransDt
Ethnic Group	Ethnicity
Gender	Sex
Language
National Origin
Nuclear Family
Race	Race

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (31)

Concept	Variables
Annual Income	NEW_Q6 Q4 Q6 Q6_TEXT
Education	Q11 Q11_TEXT Q12 Q18 Q18_TEXT Q19 Q20
Employment Status	Q10 Q14 Q15 Q16 Q7 Q8 Q9
Household	Q1 Q13 Q14 Q2 Q2_TEXT Q4 Q5
Insurance	NEW_Q22 Q21 Q22 Q22_1 Q5
Marital Status	Q3

Environmental Exposure (0)

Exposure (0)

Health Care (95)

Acute Care Utilization (1)

Concept	Variables
Facility Type
Provider Type
Quality of Care
Visit	AGE_Y_Hosp_Visit

Health Services (0)

Healthcare utilization (0)

Hospitalization (94)

Concept	Variables
Final Diagnosis	ACCIDENT ACS Acute_Anemia ACUTERF Adenoidectomy AplasticOther AplasticParvo ASTHMA AvaNerBonDam AVNHIP AVNKnee AVNOTHER AVNShoulder BACTEREMIA BoneMarNecrosis Bronchitis CColitis Cellulitis Cholecystectomy Cholecystitis ChrMental ChronicArthritis ChronicLung ChronicPain ChrRenal CognImpair Constipation CPositive DACTYLITIS DischDxPrimary DischDxSecondary DVT EDAS Fatigue FEVER FUNGUS Gallbladder GeneTherapy Hemolytic HemStroke HepaticSques HEPATOBILIARY HipResurfacing HOSP_Visit_Type Hospital HospitalState HULeukopenia HUOligoAzosp HUThrombocy INFECTION IronOverload IschStroke KidneyProblem LegUlcer LiverDis LowBoneMinD Malignancy MI MULTI_ORGANF Musculoskeletal Nephropathy OcularComp OsteomyelitisOthers OsteomyelitisSalm OsteomyelitisStaph Other PE Pneumonia PRIAPISM PsychiatricEpiso Pul_Hypertension RenalPapillaryNecrosis Rentionpathy RetinalArteryObs Seizure SleepDisor SPLENECTOMY Splenic_dis SPLENICDISEASE SplenicSequestration STROKE Tonsillectomy TotHipReplace TransfuReaction TransInfection TransIscAtt TransplantComp TransplantMut UpRespirInfec UTI Viral_Infection ViralInfection
Hospitalization	Encounter_DT Encounter_Type
ICU

SCD Management (0)

Imaging (419)

Angiogram (0)

Catheterization (0)

CT Scan (175)

Concept	Variables
Abdomen
Bone	AGE_Y_CTDEXA AGE_Y_CTDEXA AGE_Y_CTDEXA AP_Lspine_Age_Matched_Totals AP_Lspine_Area_Totals AP_Lspine_BMC_Totals AP_Lspine_BMD_Totals AP_Lspine_Peak_Reference_Totals AP_Lspine_Tscore_Totals AP_Lspine_Zscore_Totals AP_Spine_Age_Matched_Total AP_Spine_BMD_Total AP_Spine_L1_Age_Matched AP_Spine_L1_Area AP_Spine_L1_BMC AP_Spine_L1_BMD AP_Spine_L1_Peak_Reference AP_Spine_L1_Tscore AP_Spine_L1_Zscore AP_Spine_L2_Age_Matched AP_Spine_L2_Area AP_Spine_L2_BMC AP_Spine_L2_BMD AP_Spine_L2_Peak_Reference AP_Spine_L2_Tscore AP_Spine_L2_Zscore AP_Spine_L3_Age_Matched AP_Spine_L3_Area AP_Spine_L3_BMC AP_Spine_L3_BMD AP_Spine_L3_Peak_Reference AP_Spine_L3_Tscore AP_Spine_L3_Zscore AP_Spine_L4_Age_BMD AP_Spine_L4_Age_Matched AP_Spine_L4_Area AP_Spine_L4_BMC AP_Spine_L4_BMD AP_Spine_L4_Peak_Reference AP_Spine_L4_Tscore AP_Spine_L4_Zscore AP_Spine_Peak_Reference_Total AP_Spine_TScore_Total AP_Spine_ZScore_Total Lateral_Spine_Age_Matched_Total Lateral_Spine_BMD_Total Lateral_Spine_L2_Age_Matched Lateral_Spine_L2_BMD Lateral_Spine_L2_Mid_BMD Lateral_Spine_L2_Mid_Peak_Ref Lateral_Spine_L2_Mid_Tscore Lateral_Spine_L2_Mid_WABMD Lateral_Spine_L2_Mid_ZScore Lateral_Spine_L2_Peak_Ref Lateral_Spine_L2_Tscore Lateral_Spine_L2_WABMD Lateral_Spine_L2_Zscore Lateral_Spine_L3_Age_Matched Lateral_Spine_L3_BMD Lateral_Spine_L3_Mid_AgeMatch Lateral_Spine_L3_Mid_BMD Lateral_Spine_L3_Mid_Peak_Ref Lateral_Spine_L3_Mid_Tscore Lateral_Spine_L3_Mid_WABMD Lateral_Spine_L3_Mid_ZScore Lateral_Spine_L3_Peak_Ref Lateral_Spine_L3_Tscore Lateral_Spine_L3_WABMD Lateral_Spine_L3_Zscore Lateral_Spine_L4_AgeMatched Lateral_Spine_L4_BMD Lateral_Spine_L4_Mid_AgeMatch Lateral_Spine_L4_Mid_BMD Lateral_Spine_L4_Mid_Peak_Ref Lateral_Spine_L4_Mid_Tscore Lateral_Spine_L4_Mid_WABMD Lateral_Spine_L4_Mid_ZScore Lateral_Spine_L4_Peak_Ref Lateral_Spine_L4_Tscore Lateral_Spine_L4_WABMD Lateral_Spine_L4_Zscore Lateral_Spine_Mid_AgeMatched_Tot Lateral_Spine_Mid_BMD_Total Lateral_Spine_Mid_Peak_Ref Lateral_Spine_Mid_Tscore_Total Lateral_Spine_Mid_WABMD_Total Lateral_Spine_Mid_Zscore_Total Lateral_Spine_Peak_Ref_Total Lateral_Spine_TScore_Total Lateral_Spine_WABMD_Total Lateral_Spine_ZScore_Total Lateral_SpineL2_Mid_AgeMatch WholeBody_Age_Matched_Totals WholeBody_Age_Matched_WBSubtotal WholeBody_Area_Head WholeBody_Area_LArm WholeBody_Area_LLeg WholeBody_Area_LRibs WholeBody_Area_LSpine WholeBody_Area_Pelvis WholeBody_Area_RArm WholeBody_Area_RLeg WholeBody_Area_RRibs WholeBody_Area_Totals WholeBody_Area_TSpine WholeBody_Area_WBSubtotal WholeBody_BMC_Head WholeBody_BMC_LArm WholeBody_BMC_LLeg WholeBody_BMC_LRibs WholeBody_BMC_LSpine WholeBody_BMC_Pelvis WholeBody_BMC_RArm WholeBody_BMC_RLeg WholeBody_BMC_RRibs WholeBody_BMC_Totals WholeBody_BMC_Trunk WholeBody_BMC_TSpine WholeBody_BMC_WBSubtotal WholeBody_BMD_Head WholeBody_BMD_LArm WholeBody_BMD_LLeg WholeBody_BMD_LRibs WholeBody_BMD_LSpine WholeBody_BMD_Pelvis WholeBody_BMD_RArm WholeBody_BMD_RLeg WholeBody_BMD_RRibs WholeBody_BMD_Totals WholeBody_BMD_TSpine WholeBody_BMD_WBSubtotal WholeBody_Fat_Head WholeBody_Fat_LArm WholeBody_Fat_LLeg WholeBody_Fat_RArm WholeBody_Fat_RLeg WholeBody_Fat_Totals WholeBody_Fat_Trunk WholeBody_Fat_WBSubtotal WholeBody_FatPercent_Head WholeBody_FatPercent_LArm WholeBody_FatPercent_LLeg WholeBody_FatPercent_RArm WholeBody_FatPercent_RLeg WholeBody_FatPercent_Totals WholeBody_FatPercent_Trunk WholeBody_FatPercent_WBSubtotal WholeBody_Lean_Head WholeBody_Lean_LArm WholeBody_Lean_LLeg WholeBody_Lean_RArm WholeBody_Lean_RLeg WholeBody_Lean_Totals WholeBody_Lean_Trunk WholeBody_Lean_WBSubtotal WholeBody_LeanBMC_Head WholeBody_LeanBMC_LArm WholeBody_LeanBMC_LLeg WholeBody_LeanBMC_RArm WholeBody_LeanBMC_RLeg WholeBody_LeanBMC_Totals WholeBody_LeanBMC_Trunk WholeBody_LeanBMC_WBSubtotal WholeBody_Peak_Reference_Totals WholeBody_TotalMass_Head WholeBody_TotalMass_LArm WholeBody_TotalMass_LLeg WholeBody_TotalMass_RArm WholeBody_TotalMass_RLeg WholeBody_TotalMass_Totals WholeBody_TotalMass_Trunk WholeBody_TotalMass_WBSubtotal WholeBody_Tscore_Totals WholeBody_Zscore_Totals WholeBody_Zscore_WBSubtotal
Brain
Chest

Echocardiogram (228)

Concept	Variables
Echocardiogram	AGE_Y_ECHO AGE_Y_ECHO AI_Deceleration_Slope AI_Peak_Gradient AI_Peak_Velocity AI_Pressure_Half_Time Aorta_Comments AortaatSinotubularDiameter AortaatSinusesDiameter AorticArchDiameter AorticRootDiameter AorticRootDiameterMM AscendingAortaDiameter Atria_Comments Auto_LV_Ejection_Fraction_Averag AV_Comments AV_Cusp_Separation_MM AVAreaContEqpk AVAreaContEqvti AVMeanGradient AVMeanVelocity AVPeakGradient AVPeakVelocity AVVelocityTimeIntegral BodySurfaceArea BT_EVENT_STATUS CW_LV_Ejection_Time CW_LV_Myocardial_Performance_Ind EstimatedLVEjectionFraction Image_Quality Isovolumic_Contraction_Time IsovolumicRelaxationTime IVC_Comments IVC_Diameter_Expiration IVC_Diameter_Inspiration IVSDiastolicThickness IVSDiastolicThicknessMM IVSDiastolicThicknessMM IVSPercentThickening IVSSystolicThickness IVSSystolicThicknessMM LA_Ao_Ratio LA_Ao_Ratio_MM LA_Comments LA_Diastolic_Area_4C_View LA_Diastolic_Length_4C LA_Diastolic_Volume_2C_AL LA_Diastolic_Volume_4C_AL LA_Diastolic_Volume_MOD_2C LA_Diastolic_Volume_MOD_4C LA_End_Systolic_Volume_Index LA_Length_2C LA_Length_4C LA_Systolic_Length_4C LA_Systolic_Volume_2C_AL LA_Systolic_Volume_4C_AL LA_Systolic_Volume_BP_AL LA_Systolic_Volume_MOD_2C LA_Systolic_Volume_MOD_4C LA_Volume LA_Volume_Index LAArea2CView LAArea4CView LASystolicDiameterLX LASystolicDiameterMM Lateral_E_E LV_Ap_Lateral_Velocity LV_Ap_Septal_Velocity LV_Cardiac_Index_MOD_2C LV_Cardiac_Index_MOD_4C LV_Cardiac_Index_MOD_BP LV_Cardiac_Output_3D LV_Cardiac_Output_MOD_2C LV_Cardiac_Output_MOD_4C LV_Cardiac_Output_MOD_BP LV_Comments LV_Diastolic_Area_4C LV_Diastolic_Area_PSAX LV_Diastolic_Diameter_PLAX LV_Diastolic_Length_2C LV_Diastolic_Volume_2D_Teich LV_Diastolic_Volume_4C_AL LV_Diastolic_Volume_MM_Teich LV_Diastolic_Volume_MOD_2C LV_Diastolic_Volume_MOD_4C LV_Diastolic_Volume_MOD_BP LV_Ejection_Fraction_2D_Cubed LV_Ejection_Fraction_2D_Teich LV_Ejection_Fraction_3D LV_Ejection_Fraction_4C_AL LV_Ejection_Fraction_MM_Teich LV_Ejection_Fraction_MM_Teich LV_Ejection_Fraction_MOD_2C LV_Ejection_Fraction_MOD_4C LV_Ejection_Fraction_MOD_BP LV_End_Diastolic_Volume_3D LV_End_Systolic_Volume_3D LV_Ep_Lateral_Velocity LV_Ep_Lateral_Velocity LV_Ep_Septal_Velocity LV_Ep_Septal_Velocity LV_Epi_Diastolic_Area_PSAX LV_Fractional_Shortening_PLAX LV_GLPS_A2C LV_GLPS_A4C LV_GLPS_AVG LV_GLPS_LAX LV_Mass_AL LV_Relative_Wall_Thickness LV_S_Lateral_Velocity LV_S_Septal_Velocity LV_Stroke_Volume_2D_Cubed LV_Stroke_Volume_2D_Teich LV_Stroke_Volume_3D LV_Stroke_Volume_MM_Teich LV_Stroke_Volume_MOD_2C LV_Stroke_Volume_MOD_4C LV_Stroke_Volume_MOD_BP LV_Systolic_Area_4C LV_Systolic_Area_PSAX LV_Systolic_Diameter_PLAX LV_Systolic_Length_2C LV_Systolic_Volume_2D_Cubed LV_Systolic_Volume_2D_Teich LV_Systolic_Volume_4C_AL LV_Systolic_Volume_MM_Teich LV_Systolic_Volume_MOD_2C LV_Systolic_Volume_MOD_4C LV_Systolic_Volume_MOD_BP LVDiastolicDiameterMM LVDiastolicDiameterMM LVDiastolicLength4C LVFractionalShorteningMM LVFractionalShorteningMM LVMassMM LVOT_Cardiac_Index LVOT_Cardiac_Output LVOT_Stroke_Volume LVOTDiameter LVOTMeanVelocity LVOTPeakGradient LVOTPeakVelocity LVOTVelocityTimeIntegral LVPWDiastolicThickness LVPWDiastolicThicknessMM LVPWDiastolicThicknessMM LVPWSystolicThickness LVPWSystolicThicknessMM LVSystolicDiameterMM LVSystolicDiameterMM LVSystolicLength4C Mitral_E_to_LV_Ep_Lateral_Ratio Mitral_E_to_LV_Ep_Septal_Ratio MitralAPointVelocity MitralAPointVelocity MitralEPointVelocity MitralEPointVelocity MitralEtoARatio MR_ERO_PISA MR_Mean_Gradient MR_Peak_Gradient MR_Regurgitant_Volume_PISA MRPeakVelocity MRVelocityTimeIntegral MV_Comments MV_Deceleration_Slope MV_Deceleration_Slope MV_PHT_Velocity MVAreaPHT MVDecelerationTime MVDecelerationTime MVMeanGradient MVMeanVelocity MVPeakGradient MVPeakVelocity MVPressureHalfTime MVVelocityTimeIntegral Pericardium_Comments PI_Peak_Gradient PI_Peak_Velocity Pulmonary_Artery_Diastolic_Press Pulmonary_Vein_A_Duration Pulmonary_Vein_A_Velocity Pulmonary_Vein_S_D_Ratio PulmonaryVeinDiastolicVelocity PulmonaryVeinSystolicVelocity PV_Area_Cont_Eq_vti PV_Comments PVMeanGradient PVMeanVelocity PVPeakGradient PVPeakVelocity PVVelocityTimeIntegral PW_LV_Ejection_Time PW_LV_Isovolumic_Relaxation_and_ PW_LV_Myocardial_Performance_Ind Right_Atrial_Pressure Right_Ventricular_Systolic_Press RV_Comments RV_Internal_Dim_ED_PLAX RVOT_Diameter RVOT_Mean_Gradient RVOT_Mean_Velocity RVOT_Peak_Gradient RVOT_Peak_Velocity RVOT_Velocity_Time_Integral Semilunar_Valve_Comments Septal_E_E Septum_Comments TDI_LV_Contraction_Time TDI_LV_Myocardial_Performance_In TDI_LV_Relaxation_Time TRPeakGradient TRPeakVelocity TRPeakVelocity TV_A_Velocity TV_Comments TV_E_to_A_Ratio TV_E_to_TV_E_Ratio TV_E_Velocity TV_E_Velocity TV_Peak_A_Velocity TV_Peak_A_Velocity TV_Peak_E_Velocity TV_Peak_E_Velocity TV_Peak_Gradient TV_S_Velocity TV_S_Velocity

Electrocardiogram (ECG) (0)

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (0)

Nuclear Medicine Imaging (0)

PET scan (0)

Transcranial Doppler (TCD) (16)

Concept	Variables
Brain	AGE_Y_TCD DistBA LeftACA LeftBif LeftdICA LeftM1 LeftMCA LeftPCA ProxBA RelTransfusion RightACA RightBif RightdICA RightM1 RightMCA RightPCA

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (18)

Demographics (7)

Concept	Variables
Demographics
Socioeconomic Status	Q10 Q11 Q11_TEXT Q12 Q7 Q8 Q9

Psychosocial (11)

Concept	Variables
Psychosocial
Relationship	Q1 Q1_1 Q2 Q3 Q3_1 Q3_2 Q3_3 Q3_4 Q3_5 Q3_6 Q3_6_1

Quality of Life (0)

Quality of Life (175)

Functional Status (151)

Concept	Variables
Behavior
Cognitive	COGNITIVE_FATIGUE_1 COGNITIVE_FATIGUE_2 COGNITIVE_FATIGUE_3 COGNITIVE_FATIGUE_4 COGNITIVE_FATIGUE_5 COGNITIVE_FATIGUE_6 COGNITIVE_FUNCTIONING_1 COGNITIVE_FUNCTIONING_2 COGNITIVE_FUNCTIONING_3 COGNITIVE_FUNCTIONING_4 COGNITIVE_FUNCTIONING_5 COGNITIVE_FUNCTIONING_6 COGNITIVE_FUNCTIONING_7 COGNITIVE_FUNCTIONING_8 COGNITIVE_FUNCTIONING_9 COUNT_Cognitive_Fatigue COUNT_CORE_COGNF
Mental Health	CORE_EMOTIONAL_FUNCTIONING_1 CORE_EMOTIONAL_FUNCTIONING_2 CORE_EMOTIONAL_FUNCTIONING_3 CORE_EMOTIONAL_FUNCTIONING_4 CORE_EMOTIONAL_FUNCTIONING_5 COUNT_CORE_EF COUNT_CORE_EMOT COUNT_PSYCHO COUNT_PSYCOAL COUNT_SCD_EMOTIONS COUNT_SCD_WORRY_I COUNT_SCD_WORRY_II EMOTIONAL_FUNCTIONING_1 EMOTIONAL_FUNCTIONING_10 EMOTIONAL_FUNCTIONING_11 EMOTIONAL_FUNCTIONING_12 EMOTIONAL_FUNCTIONING_2 EMOTIONAL_FUNCTIONING_3 EMOTIONAL_FUNCTIONING_4 EMOTIONAL_FUNCTIONING_5 EMOTIONAL_FUNCTIONING_6 EMOTIONAL_FUNCTIONING_7 EMOTIONAL_FUNCTIONING_8 EMOTIONAL_FUNCTIONING_9 MEAN_CORE_EF MEAN_CORE_EMOT MEAN_CORE_PHYSS MEAN_PSYCHO MEAN_PSYCOAL SCD_EMOTIONS_1 SCD_EMOTIONS_2 SCD_WORRY_I_1 SCD_WORRY_I_2 SCD_WORRY_I_3 SCD_WORRY_I_4 SCD_WORRY_I_5 SCD_WORRY_II_1 SCD_WORRY_II_2
Physical	CORE_PHYSICAL_FUNCTIONING__00001 CORE_PHYSICAL_FUNCTIONING__00002 CORE_PHYSICAL_FUNCTIONING_1 CORE_PHYSICAL_FUNCTIONING_2 CORE_PHYSICAL_FUNCTIONING_3 CORE_PHYSICAL_FUNCTIONING_4 CORE_PHYSICAL_FUNCTIONING_5 CORE_PHYSICAL_FUNCTIONING_6 CORE_PHYSICAL_FUNCTIONING_7 CORE_PHYSICAL_FUNCTIONING_8 COUNT_CORE_PF COUNT_CORE_PHYSF COUNT_CORE_PHYSS COUNT_GENERAL_FATIGUE COUNT_PHYSAL COUNT_TOT_SCORE_FATIGUE MEAN_CORE_PF MEAN_CORE_PHYSF MEAN_PHYSAL PHYSICAL_FUNCTIONING_1 PHYSICAL_FUNCTIONING_2 PHYSICAL_FUNCTIONING_3 PHYSICAL_FUNCTIONING_4 PHYSICAL_FUNCTIONING_5 PHYSICAL_FUNCTIONING_6 PHYSICAL_FUNCTIONING_7 PHYSICAL_FUNCTIONING_8 PHYSICAL_FUNCTIONING_9 PHYSICAL_SYMPTOMS_1 PHYSICAL_SYMPTOMS_10 PHYSICAL_SYMPTOMS_2 PHYSICAL_SYMPTOMS_3 PHYSICAL_SYMPTOMS_4 PHYSICAL_SYMPTOMS_5 PHYSICAL_SYMPTOMS_6 PHYSICAL_SYMPTOMS_7 PHYSICAL_SYMPTOMS_8 PHYSICAL_SYMPTOMS_9
SCD Management	COUNT_SCD_COMMUNICATION_I COUNT_SCD_COMMUNICATION_II COUNT_TOT_SCORE_SCD MEAN_SCD_COMMUNICATION_I MEAN_SCD_COMMUNICATION_II MEAN_SCD_EMOTIONS MEAN_SCD_Pain_Hurt MEAN_SCD_Pain_Impact MEAN_SCD_Pain_Man_Control MEAN_SCD_TREATMENT MEAN_SCD_WORRY_I MEAN_SCD_WORRY_II MEAN_TOTAL_SCORE SCD_COMMUNICATION_I_1 SCD_COMMUNICATION_I_2 SCD_COMMUNICATION_I_3 SCD_COMMUNICATION_II_1 SCD_COMMUNICATION_II_2 SCD_COMMUNICATION_II_3
Sleep/Fatigue	COUNT_Sleep_Rest_Fatigue GENERAL_FATIGUE_1 GENERAL_FATIGUE_2 GENERAL_FATIGUE_3 GENERAL_FATIGUE_4 GENERAL_FATIGUE_5 GENERAL_FATIGUE_6 MEAN_Cognitive_Fatigue MEAN_GENERAL_FATIGUE MEAN_Sleep_Rest_Fatigue SLEEP_REST_FATIGUE_1 SLEEP_REST_FATIGUE_2 SLEEP_REST_FATIGUE_3 SLEEP_REST_FATIGUE_4 SLEEP_REST_FATIGUE_5 SLEEP_REST_FATIGUE_6
Social	CORE_SCHOOL_FUNCTIONING_1 CORE_SCHOOL_FUNCTIONING_2 CORE_SCHOOL_FUNCTIONING_3 CORE_SCHOOL_FUNCTIONING_4 CORE_SCHOOL_FUNCTIONING_5 CORE_SOCIAL_FUNCTIONING_1 CORE_SOCIAL_FUNCTIONING_2 CORE_SOCIAL_FUNCTIONING_3 CORE_SOCIAL_FUNCTIONING_4 CORE_SOCIAL_FUNCTIONING_5 COUNT_CORE_SCF COUNT_CORE_SF COUNT_CORE_SOCIF IN_SCHOOL MEAN_CORE_COGNF MEAN_CORE_SCF MEAN_CORE_SF MEAN_CORE_SOCIF SOCIAL_FUNCTIONING_1 SOCIAL_FUNCTIONING_2 SOCIAL_FUNCTIONING_3 SOCIAL_FUNCTIONING_4 SOCIAL_FUNCTIONING_5

General Health (2)

Concept	Variables
General Health	Count_TOT_SCORE_CORE COUNT_TOTAL

Pain (22)

Concept	Variables
General Pain	COUNT_SCD_Pain_Hurt COUNT_SCD_Pain_Impact COUNT_SCD_Pain_Man_Control SCD_PAIN_HURT_1 SCD_PAIN_HURT_2 SCD_PAIN_HURT_3 SCD_PAIN_HURT_4 SCD_PAIN_HURT_5 SCD_PAIN_HURT_6 SCD_PAIN_HURT_7 SCD_PAIN_HURT_8 SCD_PAIN_HURT_9 SCD_PAIN_IMPACT_1 SCD_PAIN_IMPACT_10 SCD_PAIN_IMPACT_2 SCD_PAIN_IMPACT_3 SCD_PAIN_IMPACT_4 SCD_PAIN_IMPACT_5 SCD_PAIN_IMPACT_6 SCD_PAIN_IMPACT_7 SCD_PAIN_IMPACT_8 SCD_PAIN_IMPACT_9
Pain Attack
Skeletal and Joint Pain

Tests (168)

Biopsy (0)

Blood (82)

Concept	Variables
Blood Differential Test
Blood Gases	AGE_Y_BloodGas Base_Excess_Venous Bicarbonate_Venous BloodGas_DT BloodGas_TM Carboxyhemoglobin_Venous Methemoglobin_Venous O2_Satura_Venous O2Sat_DT O2Sat_TM PCO2_Venous pH_Venous PO2_Venous PO2_Venous_Comment PulseO2Sat PulseO2Sat_monitor SpO2_nadir
Blood Smear
Blood Typing	IgG IgG_Comment IgM IgM_Comment
Coagulation Test
Complete Blood Count	AGE_Y_CBC ANC ARC CBC_DT CBC_TM DAY_INTERVAL DAY_INTERVAL DAY_INTERVAL MCH MCHC MCV MPV PLT RBC RDW URBC URBC_Comment WBC
Comprehensive Metabolic Panel (CMP)	Ferritin AGE_Y_BloodChem AGE_Y_GFR ALB_LVL ALP BloodChem_DT BloodChem_TM BUN Calcuim_Lvl CI CO2 Creatinine D_Bilirubin DAY_INTERVAL DAY_INTERVAL e_gfr Glucose_Lvl HCT I_Bilirubin K NA Result SGOT SGPT UncorrResult
Enzyme	LDH
General	AGE_Y_HsCRP Cystatin_C HsCRP HsCRP_Comment
Hemoglobin Typing	AGE_Y_HbID DAY_INTERVAL Genotype Hgb Hgb_A Hgb_A2 Hgb_C Hgb_D Hgb_E Hgb_F Hgb_F_Acetyl Hgb_Other Hgb_S
Iron

Cardiovascular (1)

Concept	Variables
Cardiovascular Test	TST_SpO2

Genitourinary (13)

Concept	Variables
Genitourinary Test
Urine Test	AGE_Y_URINE CURandom DAY_INTERVAL MCRatio MCRatio_Comment MURandom MURandom MURandom_Comment PCRatio PCRatio_Comment PURandom PURandom_Comment USGravity

Immune (7)

Concept	Variables
Serology	AGE_Y_VS DAY_INTERVAL DAY_INTERVAL DAY_INTERVAL VS_DT VS_TM Warm

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (12)

Concept	Variables
Other	Spon_Arousal_Index TOT_SCORE_CORE TOT_SCORE_FATIGUE TOT_SCORE_SCD Total_AHI Total_Arousal_Index wFSIQ wjLWI_standard wjMF_standard wramlSM_scaled wramlSMdelayed_scaled wramlSMrecog_scaled

Physical Exam (30)

Concept	Variables
Abdomen
Anthropometrics	Age_at_BSADT Age_at_MeasureDT BMI BMI_CAL BSA BSA_DT BSA_TM Dominance height_cm height_in HT weight_kg weight_lbs Wt WT
Cardiovascular	AGE_Y_BP HR
Extremities
General	gpDomHand_z gpNonDomHand_z TempC
Liver
Reproductive
Respiratory	TLC TLC_CH_POST TLC_POST TLC_PREDICT_POST TLC_PREDICT_PRE
Spleen
Vital signs	AGE_Y_O2Sat DBP DBP SBP SBP

Reproductive (0)

Respiratory (23)

Concept	Variables
Pulmonary Function Test	AGE_Y_PFT DLCOcor_PREDICT_PRE Expiratory_TM Expiratory_TM_POST FEF2575 FEF2575_CH_POST FEF2575_POST FEF2575_PREDICT_POST FEF2575_PREDICT_PRE FEV1 FEV1_CH_POST FEV1_FVC FEV1_POST FEV1_PREDICT_POST FEV1_PREDICT_PRE FVC FVC_CH_POST FVC_POST FVC_PREDICT_POST FVC_PREDICT_PRE PFT_DT RV RV_POST
Respiratory Test

Therapeutics (197)

Medication (65)

Concept	Variables
Antibiotics
Asthma
Blood Medication History
Cardiovascular
Compliance	SCD_TREATMENT_1 SCD_TREATMENT_2 SCD_TREATMENT_3 SCD_TREATMENT_4 SCD_TREATMENT_5 SCD_TREATMENT_6 SCD_TREATMENT_7
Current Medication
Depression Medication History
Hydroxyurea	CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU CUR_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU EVER_ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU ON_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU SUM_HU
Medication
Neurologic Medication History
Pain
SCD Medication	Age_Voxelotor
Sildenafil
Supplements

Surgery (0)

Transfusion (130)

Concept	Variables
Blood Transfusion	Administration Age_BT AGE_Y_AlloIM AlloIM_DT AlloIM_TM Anti_C Anti_D Anti_E Anti_Fya Anti_Jka Anti_Jkb Anti_M Anti_N Anti_S Antibody_Id1 Antibody_Id2 Antibody_Screen BloodTran_End_DT BloodTran_Start_DT BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS BT_EVENT_STATUS Cold DAY_INTERVAL DAY_INTERVAL DAY_INTERVAL DAY_INTERVAL DAY_INTERVAL EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT EVER_BT Location ProductABORh ProductType TOTAL_BT Total_Removed TOTAL_SBT TOTAL_SBT TOTAL_SBT TOTAL_SBT Total_Sleep_Time Total_Transfused Total_Units TProtein TransfusedByWeight
Chronic Transfusion	Age_at_CTXN Age_at_CTXN Age_at_CTXN Age_at_CTXN Age_at_CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CTXN CUR_CTXN CUR_CTXN CUR_HU CUR_ON_CTXN CUR_ON_CTXN CUR_ON_CTXN CUR_ON_CTXN CUR_ON_CTXN CUR_ON_CTXN CUR_ON_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_CTXN EVER_ON_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN SUM_CTXN
Transfusion Complications	Reaction

Transplantation (1)

Concept	Variables
Conditioning
Transplantation	BMT_DT

Treatment (1)

Concept	Variables
Discontinuation
Oxygen
Treatment	COUNT_SCD_TREATMENT

Study Publications

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Mental Health (0)

Neurodevelopment (12)

Concept	Variables
Achenbach Child Behavior Checklist (CBCL)
Bayley Scale of Infant and Toddler Development
Behavior Rating Inventory of Executive Function (BRIEF)	briefSelfBRI_t briefSelfEC_t briefSelfGEC_t briefSelfInhibit_t briefSelfInitiate_t briefSelfMI_t briefSelfOoM_t briefSelfPO_t briefSelfShift_t briefSelfSM_t briefSelfTM_t briefSelfWM_t
California Verbal Learning Test
Children's Memory Scale
Connor's Continuous Performance Test II
Delis-Kaplan Executive Function System (D-KEFS)
NeuroQOL Cognitive Function
Peabody Picture Vocabulary Test (PPVT)

Neuropsychological (12)

Concept	Variables
Adaptive Behavior Assessment System-II
Adverse Childhood Experience Questionnaire (ACE-Q)
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	wBD_scaled wCoding_scaled wDSB_scaled wDSF_scaled wDSSeq_scaled wDST_scaled Wechsler wMR_scaled wPRI wVCI wVocab_scaled
Wechsler Memory Scale	wSimilarities_scaled
Wisconsin Card Sorting Test
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability

Pain (0)

Physical Function (0)

Psychosocial (0)

Quality of Care (0)

Quality of Life (187)

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)	COGNITIVE_FUNCTIONING_1 COGNITIVE_FUNCTIONING_2 COGNITIVE_FUNCTIONING_3 COGNITIVE_FUNCTIONING_4 COUNT_CORE_COGNF COUNT_CORE_EMOT COUNT_CORE_PHYSF COUNT_CORE_PHYSS COUNT_CORE_SOCIF COUNT_PHYSAL COUNT_PSYCOAL COUNT_TOTAL EMOTIONAL_FUNCTIONING_1 EMOTIONAL_FUNCTIONING_10 EMOTIONAL_FUNCTIONING_11 EMOTIONAL_FUNCTIONING_12 EMOTIONAL_FUNCTIONING_2 EMOTIONAL_FUNCTIONING_3 EMOTIONAL_FUNCTIONING_4 EMOTIONAL_FUNCTIONING_5 EMOTIONAL_FUNCTIONING_6 EMOTIONAL_FUNCTIONING_7 EMOTIONAL_FUNCTIONING_8 EMOTIONAL_FUNCTIONING_9 MEAN_CORE_COGNF MEAN_CORE_EMOT MEAN_CORE_PHYSF MEAN_CORE_PHYSS MEAN_CORE_SOCIF MEAN_PHYSAL MEAN_PSYCOAL MEAN_TOTAL_SCORE PHYSICAL_FUNCTIONING_1 PHYSICAL_FUNCTIONING_2 PHYSICAL_FUNCTIONING_3 PHYSICAL_FUNCTIONING_4 PHYSICAL_FUNCTIONING_5 PHYSICAL_FUNCTIONING_6 PHYSICAL_SYMPTOMS_1 PHYSICAL_SYMPTOMS_10 PHYSICAL_SYMPTOMS_2 PHYSICAL_SYMPTOMS_3 PHYSICAL_SYMPTOMS_4 PHYSICAL_SYMPTOMS_5 PHYSICAL_SYMPTOMS_6 PHYSICAL_SYMPTOMS_7 PHYSICAL_SYMPTOMS_8 PHYSICAL_SYMPTOMS_9 SOCIAL_FUNCTIONING_1 SOCIAL_FUNCTIONING_2 SOCIAL_FUNCTIONING_3 SOCIAL_FUNCTIONING_4
Pediatric Quality of Life Inventory (PedsQL) (ages 13-24ms)	COGNITIVE_FUNCTIONING_5 COGNITIVE_FUNCTIONING_6 COGNITIVE_FUNCTIONING_7 COGNITIVE_FUNCTIONING_8 COGNITIVE_FUNCTIONING_9 PHYSICAL_FUNCTIONING_7 PHYSICAL_FUNCTIONING_8 PHYSICAL_FUNCTIONING_9 SOCIAL_FUNCTIONING_5
Pediatric Quality of Life Inventory (PedsQL) (ages 2-4ys)	COGNITIVE_FATIGUE_1 COGNITIVE_FATIGUE_2 COGNITIVE_FATIGUE_3 COGNITIVE_FATIGUE_4 COGNITIVE_FATIGUE_5 COGNITIVE_FATIGUE_6 CORE_EMOTIONAL_FUNCTIONING_1 CORE_EMOTIONAL_FUNCTIONING_2 CORE_EMOTIONAL_FUNCTIONING_3 CORE_EMOTIONAL_FUNCTIONING_4 CORE_EMOTIONAL_FUNCTIONING_5 CORE_PHYSICAL_FUNCTIONING_1 CORE_PHYSICAL_FUNCTIONING_2 CORE_PHYSICAL_FUNCTIONING_3 CORE_PHYSICAL_FUNCTIONING_4 CORE_PHYSICAL_FUNCTIONING_5 CORE_PHYSICAL_FUNCTIONING_6 CORE_PHYSICAL_FUNCTIONING_7 CORE_PHYSICAL_FUNCTIONING_8 CORE_SCHOOL_FUNCTIONING_1 CORE_SCHOOL_FUNCTIONING_2 CORE_SCHOOL_FUNCTIONING_3 CORE_SOCIAL_FUNCTIONING_1 CORE_SOCIAL_FUNCTIONING_2 CORE_SOCIAL_FUNCTIONING_3 CORE_SOCIAL_FUNCTIONING_4 CORE_SOCIAL_FUNCTIONING_5 COUNT_Cognitive_Fatigue COUNT_CORE_EF COUNT_CORE_PF COUNT_CORE_SCF COUNT_CORE_SF COUNT_GENERAL_FATIGUE COUNT_PSYCHO COUNT_SCD_COMMUNICATION_I COUNT_SCD_COMMUNICATION_II COUNT_SCD_EMOTIONS COUNT_SCD_Pain_Hurt COUNT_SCD_Pain_Impact COUNT_SCD_Pain_Man_Control COUNT_SCD_TREATMENT COUNT_SCD_WORRY_I COUNT_SCD_WORRY_II COUNT_Sleep_Rest_Fatigue Count_TOT_SCORE_CORE COUNT_TOT_SCORE_FATIGUE COUNT_TOT_SCORE_SCD GENERAL_FATIGUE_1 GENERAL_FATIGUE_2 GENERAL_FATIGUE_3 GENERAL_FATIGUE_4 GENERAL_FATIGUE_5 GENERAL_FATIGUE_6 IN_SCHOOL MEAN_Cognitive_Fatigue MEAN_CORE_EF MEAN_CORE_PF MEAN_CORE_SCF MEAN_CORE_SF MEAN_GENERAL_FATIGUE MEAN_PSYCHO MEAN_SCD_COMMUNICATION_I MEAN_SCD_COMMUNICATION_II MEAN_SCD_EMOTIONS MEAN_SCD_Pain_Hurt MEAN_SCD_Pain_Impact MEAN_SCD_Pain_Man_Control MEAN_SCD_TREATMENT MEAN_SCD_WORRY_I MEAN_SCD_WORRY_II MEAN_Sleep_Rest_Fatigue SCD_COMMUNICATION_I_1 SCD_COMMUNICATION_I_2 SCD_COMMUNICATION_I_3 SCD_COMMUNICATION_II_1 SCD_COMMUNICATION_II_2 SCD_COMMUNICATION_II_3 SCD_EMOTIONS_1 SCD_EMOTIONS_2 SCD_PAIN_HURT_1 SCD_PAIN_HURT_2 SCD_PAIN_HURT_3 SCD_PAIN_HURT_4 SCD_PAIN_HURT_5 SCD_PAIN_HURT_6 SCD_PAIN_HURT_7 SCD_PAIN_HURT_8 SCD_PAIN_HURT_9 SCD_PAIN_IMPACT_1 SCD_PAIN_IMPACT_10 SCD_PAIN_IMPACT_2 SCD_PAIN_IMPACT_3 SCD_PAIN_IMPACT_4 SCD_PAIN_IMPACT_5 SCD_PAIN_IMPACT_6 SCD_PAIN_IMPACT_7 SCD_PAIN_IMPACT_8 SCD_PAIN_IMPACT_9 SCD_PAIN_MANAGEMENT_CONTROL_1 SCD_PAIN_MANAGEMENT_CONTROL_2 SCD_TREATMENT_1 SCD_TREATMENT_2 SCD_TREATMENT_3 SCD_TREATMENT_4 SCD_TREATMENT_5 SCD_TREATMENT_6 SCD_WORRY_I_1 SCD_WORRY_I_2 SCD_WORRY_I_3 SCD_WORRY_I_4 SCD_WORRY_I_5 SCD_WORRY_II_1 SCD_WORRY_II_2 SLEEP_REST_FATIGUE_1 SLEEP_REST_FATIGUE_2 SLEEP_REST_FATIGUE_3 SLEEP_REST_FATIGUE_4 SLEEP_REST_FATIGUE_5 SLEEP_REST_FATIGUE_6 TOT_SCORE_CORE TOT_SCORE_FATIGUE TOT_SCORE_SCD
Pediatric Quality of Life Inventory (PedsQL) (ages 5-7)	CORE_PHYSICAL_FUNCTIONING__00001 CORE_PHYSICAL_FUNCTIONING__00002 CORE_SCHOOL_FUNCTIONING_4 CORE_SCHOOL_FUNCTIONING_5
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
PROMIS Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey

Sleep (0)

Technology Support (0)

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