Details - CureSickleCell

Study ID	1026
Name	Comprehensive Sickle Cell Centers' (CSCC) -Neuropsych
Contact Email	EVichinsky@mail.cho.org
Acronym	CSCC-Neuropsych
Period	2004 - 2008
Design	Observational cohort study
Study PI	Elliott Vichinsky
Institution	RTI International
URL	https://clinicaltrials.gov/ct2/show/NCT00528801
CTGovID	https://clinicaltrials.gov/ct2/show/NCT00528801
Funding Agency	NHLBI
Grant Number	5U54HL070587-04

Overview	In Phase I, approximately 156 subjects will participate in a cross-sectional studyconsisting of screening questionnaires, a neuropsychological testing battery, and MRI testing. InPhase II, a subset of approximately 30 participants will be asked to participate in a transfusionintervention. Half will be randomized to undergo a chronic transfusion regimen for six months, and theother half will be treated with standard care alone, guided by their disease symptoms.
Focus Areas	1. To determine the extent of neurocognitive dysfunction in neurologicallyasymptomatic adult patients with sickle cell disease. 2. To determine the association between neurocognitive dysfunction and imagingabnormalities.
Outcomes	1. Wechsler Adult Intelligence Scale (WAIS)-III Performance IQ [ Time Frame: Within 2 months of signing informed consent.] 2. Participants With Brain Lacunae as Measured by Clinical MRI [ Time Frame: Within 2 months of informed consent ] 3. Volume of Total Cortical Gray Matter as Measured by Volumetric MRI. [ Time Frame: Within 2 months of informed consent ]

Data Location	RTI International
Biospecimen Available	Blood; Urine;
Data Consent	Consent includes Certificate of Confidentiality. Deidentified data may be used for continuing research.
Biospecimen Consent	NA
Contact Consent	NA
Genomic Data	No

Age Range	21 - 55
No. Participants	212
Inclusion Criteria	1. Adult between the ages of 21 and 55 2. African descent 3. Proficient/fluent in English 4. Hemoglobin electrophoresis confirming hemoglobin SS or SB0 (%A <= 15) 5. Hemoglobin <= 10 g/dL 6. Capable of giving informed consent for the protocol
Exclusion Criteria	1. Overt stroke 2. Previous evidence of an abnormal MRI or CT other than small peri-ventricular or watershed lesions 3. History of head injury that resulted in neurological symptoms or medical visit 4. Abnormal neurologic exam with focal findings 5. Mini-Mental Status Examination (MMSE) score of < 20 6. Profile of Mood States (POMS) score on the Depression-Dejection Subscale suggestive of a clinical depression (score > 40) 7. Alcohol consumption exceeding 14 drinks/week if female, 21 drinks/week if male 8. Drug abuse, defined as using non-prescribed medication 9. History of claustrophobia and/or presence of metallic implants such as pacemakers, surgical aneurysm clips, or known metal fragments embedded in the body 10. Pregnancy 11. Baseline blood pressure > 140/90 on two repeated measurements. A second measurement is needed only if the first is > 140/90 12. History of uncontrolled hypertension 13. Any chronic disorder that may result in neurocognitive or brain dysfunction that is not secondary to SCD. 14. Currently on Procrit or related drug that stimulates red blood cell production

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Clinical status (512)

Behavior (32)

Data Element	Variables
Substance Use	AMPHN AMPHNAC BEERN BEERNAC CRACKN CRACKNAC HEROIN HEROINAC INHALN INHALNAC LSDN LSDNAC MARIJN MARIJNAC MDMAN MDMANAC MTHCAN MTHCANAC NARCON NARCONAC OTALCN OTALCNAC OTDRGN OTDRGNAC PSYCHN PSYCHNAC RITALN RITALNAC TRANQN TRANQNAC WINEN WINENAC

Blood (1)

Data Element	Variables
Acute Anemic Episode
Aplastic Crisis
Bleeding
Other Blood Problem
Sickle Cell Disease	DIAGNOS

Cancer (2)

Data Element	Variables
Cancer	CANCER CANCEROC

Cardiovascular (22)

Data Element	Variables
Aneurysm
Cardiac Failure
Cardiovascular Problem	CORART CORART CORARTOC HYPERL HYPERLOC HYPERT HYPERTOC INFART INFART INFARTOC THROMB THROMB THROMBOC
Heart Problem	ANGINA ANGINA ANGINAOC ARRHYT ARRHYT ARRHYTOC HEARTF HEARTF HEARTFOC

Digestive (8)

Data Element	Variables
Gastrointestinal Problem	ABNMOV ABNMOVOC GASTRO GASTROOC
Hepatitis	HEPAT HEPATOC
Liver Problem	LIVERF LIVERFOC

Endocrine (6)

Data Element	Variables
Diabetes Mellitus	DIABET DIABETOC
Endocrine Problem	ENDORG ENDORGOC HORMON HORMONOC

Family MedHx (0)

General Health (0)

Genitourinary (5)

Data Element	Variables
Genitourinary Problem
Kidney Problem	RENALF RENALFOC RenalInsuff
Priapism
Renal Dialysis History	DIALYS DIALYSOC

Immune (4)

Data Element	Variables
Fever
HIV Infection
Immune Problem	IMMUNE IMMUNEOC
Infection	INFECT INFECTOC
Vaccination

Lymphatic (0)

Medical Event (19)

Data Element	Variables
Adverse event	ACTION1 ACTION2 ACTION3 ACTION4 ACTION5 ACTION6 ONSETDY OUTCOME P2ADVEXPS P2WDINTREL P2WITHDRWAE RELATED SEVERE STOPDY
Death	DEATH P2DEATHYN P2WITHDRWDEATH
Disability Status
Hospitalization
Medical Event
Serious Adverse Event	SAEYN SOC

Medical History (0)

Mental Health (8)

Data Element	Variables
Anxiety	PSSSUMSCORE
Depression	DEPRESS
Emotional Health
Mental status
Psychiatric Disorder	CLAUST CLAUSTOC PSYCDI PSYCDIOC PSYCHO PSYCHOOC

Musculoskeletal (3)

Data Element	Variables
Musculoskeletal Problem
Osteomyelitis
Osteonecrosis	AVN AVN AVNOC
Rheumatic Diseases

Neurodevelopmental (358)

Data Element	Variables
Behavior
Cognition	ACCPCT1 ACCPCT2 ADINDEX AIINDEX ANY_WMH ARDINDX ASSDY BIASSTN CONFINT CORSTN5 CORSTN6 CORSTN7 CORSTN8 CWCOMPS CWCON1S CWCON2S CWCON3S CWCON4S CWCONTA CWCONTB CWCONTC DIFFP DIFFQ DIFFR DIFFS DIFFT DIFFU DIFFV DISCSTN DYSARTH ECD ECR FPSTN6 FRQDIFA FRQDIFB FRQDIFC FRQDIFD FRQDIFE FRQDIFF FRQDIFG FRQDIFH FRQDIFI FRQDIFJ FRQDIFK FRQDIFL FRQDIFM FRQDIFN FRQDIFP FRQDIFQ FRQDIFR FRQDIFS FRQDIFT FRQDIFU FRQDIFV FSIQCON FSIQIND FSIQPCT FSIQSUM FULLSS GMINDEX HITSTN5 IMINDEX INTSTN3 L LDRZSCR LEVEL1 LVLCON LVLCON LVLCONFOCL LVLCONOC MDIFFA MDIFFB MDIFFC MDIFFD MDIFFE MDIFFF MDIFFG MDIFFH MDIFFI MDIFFJ MDIFFK MDIFFL MDIFFM MDIFFN MEANA MEANB MEANC MEAND MEANE MEANF MEANG MEANH MEANI MEANJ MEANK MEANL MEANM MEANN MMSETOT MS1 MS2 P21TSCR10 P21TSCR10NUM P21TSCR12 P21TSCR12NUM P21TSCR3 P21TSCR3NUM P21TSCR4 P21TSCR4NUM P21TSCR5 P21TSCR5NUM P21TSCR6 P21TSCR6NUM P21TSCR7 P21TSCR7NUM P21TSCR8 P21TSCR8NUM P21TSCR9 P21TSCR9NUM P23TSCR10 P23TSCR10NUM P23TSCR12 P23TSCR12NUM P23TSCR3 P23TSCR3NUM P23TSCR4 P23TSCR4NUM P23TSCR5 P23TSCR5NUM P23TSCR6 P23TSCR6NUM P23TSCR7 P23TSCR7NUM P23TSCR8 P23TSCR8NUM P23TSCR9 P23TSCR9NUM PERFA PERFC PERFE PERFG PERFJ PERFL PERFN PERFS PIQ_P PIQCON PIQIND PIQIND_LE85 PIQPCT PIQSUM POA POE POG POI_Q POI_S POI_U POICON POIIND POIPCT POISUM POS PSC PSI_S PSI_T PSI_V PSICON PSIIND PSIPCT PSISUM PSL PSS RAWA RAWB RAWC RAWD RAWE RAWF RAWG RAWH RAWI RAWJ RAWK RAWL RAWM RAWN REPSTN4 SCALEA1 SCALEA2 SCALEB1 SCALEB2 SCALEC1 SCALEC2 SCALED1 SCALED2 SCALEE1 SCALEE2 SCALEF1 SCALEF2 SCALEG1 SCALEG2 SCALEH1 SCALEH2 SCALEI1 SCALEI2 SCALEJ1 SCALEJ2 SCALEK1 SCALEK2 SCALEL1 SCALEL2 SCALEM1 SCALEM2 SCALEN1 SCALEN2 SDRZSCR SEMSTN SERSTN STATA STATB STATC STATD STATE STATF STATG STATH STATI STATJ STATK STATL STATM STATN STATP STATQ STATR STATS STATT STATU STATV STRWEKA STRWEKB STRWEKC STRWEKD STRWEKE STRWEKF STRWEKG STRWEKH STRWEKI STRWEKJ STRWEKK STRWEKL STRWEKM STRWEKN SUBSTN TDRSTN TLSTSTN TMCOMPS TMCON1S TMCON2S TMCON3S TMCON4S TMCON5S TMCONTA TMCONTB TMCONTC TMCONTD TMCONTE TQSCLA TQSCLB TQSCLC TS TSC TTACHVS VCB VCD VCI VCI_Q VCI_R VCI_T VCICON VCIIND VCIPCT VCISUM VCS VDINDEX VE1 VE2 VERBB VERBD VERBF VERBH VERBI VERBK VERBM VERBS VFCN3AS VFCN3BS VFCON1S VFCON2S VFCSCF4 VFLFCF4 VIINDEX VIQ_P VIQCON VIQIND VIQPCT VIQSUM WMF WMH WMH WMI_R WMI_U WMI_V WMICON WMIIND WMIPCT WMISUM WMM WMS
Developmental	GENET GENETOC NEUROD NEURODOC SPEECH SPEECHOC
Motor	ABNMOV CLUMSY CLUMSY CLUMSYOC GAIT
Sensation	CORNEAL EXOCUL FACSENS FACSTRN GAG GAZE HEARING HEMARM HEMARMOC HEMFAC HEMFACOC HEMLEG HEMLEGOC LLOFACE LUPFACE NUM_CAT NUMARM NUMARMOC NUMFAC NUMFACOC NUMLEG NUMLEGOC PALATE PUPILS RLOFACE RUPFACE TONGUE TRAPEZ

Neurologic (19)

Data Element	Variables
Meningitis
Neurologic Event	GENET HEADIN HEADIN HEADINOC HEM_CAT HEMARM HEMFAC HEMLEG ILLNES ILLNESOC NEUROD SPEECH VISION
Seizure	SEIZUR SEIZUR SEIZUROC
Stroke	STROKE STROKE STROKEOC
Transient Ischemic Attack

Nutritional and Metabolic (0)

Ocular (2)

Data Element	Variables
Ocular Problem	VISION VISIONOC
Sickle Retinopathy

Oral (0)

Pain (5)

Data Element	Variables
Abdominal Pain
General Pain	SFQ7 SFQ8
Headache	HEADAC HEADAC HEADACOC
Management
Pain Attack
Skeletal and Joint Pain

Reproductive (3)

Data Element	Variables
Birth Outcome
Gestational Age
Menstruation
Pregnancy	P2WITHDRWPREG PRGCOM PRGCOMOC
Reproductive Behavior

Respiratory (12)

Data Element	Variables
Acute Chest Syndrome	ACSHOS ACSHOS ACSHOSOC
Asthma	ASTHMA ASTHMA ASTHMAOC
Lung Disease	LUNGDI LUNGDI LUNGDIOC VENTIL
Other Respiratory Problem	VENTIL VENTILOC

Skin (0)

Sleep (3)

Data Element	Variables
Sleep Problem	APNEA APNEA APNEAOC

Surgery History (0)

COVID-19 (0)

Diagnosis (0)

Impact (0)

Treatment (0)

Vaccination (0)

Demographics (15)

Demographics (11)

Data Element	Variables
Address
Age	AGE AGEGROUP AGEGROUP
Ethnic Group	ETHNIC
Gender	GENDER
Language
National Origin
Nuclear Family
Race	AFRAMER AMERIND ASIAN HAWAII RACEOT WHITE

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (4)

Data Element	Variables
Annual Income
Education	GRADE GRADE GRADEGROUP GRADEGROUP2
Employment Status
Household
Insurance
Marital Status

Environmental Exposure (0)

Exposure (0)

Health Care (0)

Acute Care Utilization (0)

Healthcare utilization (0)

Health Services (0)

Hospitalization (0)

SCD Management (0)

Imaging (13)

Angiogram (0)

Catheterization (0)

CT Scan (2)

Data Element	Variables
Abdomen	ABNMRI ABNMRIOC
Bone
Brain
Chest

Echocardiogram (0)

Electrocardiogram (ECG) (0)

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (11)

Data Element	Variables
Brain	Tot_Hippo_Vol RightHippocampusVolume P1ATROPHY LeftHippocampusVolume P1INFARCT P1INFLOC1 P1INFLOC2 P1OTHFIND P1WLESION ANY_ATROPHY ABNMRI
Heart
Hip
Liver

Nuclear Medicine Imaging (0)

PET scan (0)

Transcranial Doppler (TCD) (0)

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (0)

Demographics (0)

Psychosocial (0)

Quality of Life (0)

Quality of Life (26)

General Health (0)

Pain (0)

Patient Functioning (26)

Data Element	Variables
Cognitive Functioning	BATOBS111 BATOBS112 BATOBS113 P21AGG_MENT P23AGG_MENT PSSQ1 PSSQ10 PSSQ2 PSSQ3 PSSQ4 PSSQ5 PSSQ6 PSSQ7 PSSQ8 PSSQ9 SCRINCL2 WAISPIQIND1
Emotional Functioning
Physical Functioning	P21AGG_PHYS P23AGG_PHYS SFQ1 SFQ11A SFQ11B SFQ11C SFQ11D
School Functioning
Social Functioning	SFQ10 SFQ6

SCD (0)

Tests (111)

Biopsy (0)

Blood (64)

Data Element	Variables
Blood Differential Test	P1NEUTROPHILS P23NEUTROPHILS_CHG
Blood Gases
Blood Smear
Blood Typing	ANTIB1 ANTIB1N DIRCO INDIRCO SCRNRES
Coagulation Test
Complete Blood Count	HCT HGB NEUT P1HCT P1HGB P1NEUTROPHIL P1PLTS P1WBC P23HCT_CHG P23HGB_CHG P23PLTS_CHG P23WBC_CHG PLATE SCRINCL3 WBC
Comprehensive Metabolic Panel (CMP)	ALT AST BUN CREAT GLUC GLUCFAS LDH_FLS LDH_NFLAG LDH_NLS LDH780 P1ALT P1AST P1BUN P1CREATE P1GLUC P1LDH P1TOTBILI P22ALT_CHG P22AST_CHG P22BUN_CHG P22FERRITIN_CHG P22GLUC_CHG P22TOTBILI_CHG P23CREATE_CHG TOTBILI
Enzyme	LDH
General
Hemoglobin Typing	HGBA HGBA HGBA2 HGBA2 HGBF HGBOTH HGBS P1HGBS P23HGBS_CHG PTRHGBA PTRHGBA2 PTRHGBF PTRHGBOTH PTRHGBOTHS PTRHGBS
Iron	FERRITN

Cardiovascular (0)

Genitourinary (0)

Immune (0)

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (0)

Physical Exam (47)

Data Element	Variables
Abdomen	ABDOMN
Anthropometrics	HEIGHTB WEIGHT WEIGHTB
Cardiovascular	RHYABN MURMUR BPDIA BPSYS
Extremities	EDEMA SENSO LEGULC MOTOR MUSCUL PAIN
General	EARS EYES CHEST DERMAT GENAPP GENITO HEDNEK SPINE TONSIL LYMPH MOTORLAC MOTORLLC MOTORRAC MOTORRLC NOSETM SENSOC SENSOLAC SENSOLLC SENSORAC SENSORLC
Liver	LIVTND LIVER
Reproductive
Respiratory	RALES RESP RHONCH MOUTHB CARDIO WHEEZ
Spleen	SPLEEN
Vital signs	BPDIAB BPSYSB HEARTRTB RESPRATB

Reproductive (0)

Respiratory (0)

Therapeutics (45)

Medication (25)

Data Element	Variables
Antibiotics
Asthma
Blood Medication History
Cardiovascular	HARTMD HARTMD HARTMDOC
Compliance
Current Medication	CMENDY CMIND CMINF CMMED CMNAME CMONGO CMPT CMSTDY CMSTDY_F INDICAT INTERV MEDICAT ONGOING RECORD STARTDY STARTDYI STARTYRR STOPDY STOPYRR
Depression Medication History
Hydroxyurea	HYDROX
Medication	PSYCMDOC
Neurologic Medication History	PSYCMD
Pain
SCD Medication
Sildenafil
Supplements

Surgery (0)

Transfusion (20)

Data Element	Variables
Blood Transfusion	FTRANDY LEUKDEP NUM_DAYS PCELLU PHENMAT PSTRAND PTRHCT PTRHGB RBCMAX RBCMAXS REASON SAMPDY SCHED TRANDY TRANNUM TRANYN
Chronic Transfusion	CTRANS CTRANS CTRANSOC
Transfusion Complications	TRANRXN

Transplantation (0)

Treatment (0)

Study Publications

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Mental Health (1)

Data Element	Variables
ASCQ-Me Emotional Impact
ASCQ-Me Social Functioning
Brief Resiliency Scale
NeuroQOL Fatigue
NIH Toolbox Loneliness
Pearlin Enhanced Self-Efficacy Scale
Profile of Mood States (POMS)	DEPRESS
PROMIS Anger
PROMIS Anxiety
PROMIS Depression
PROMIS Emotional Distress- Depression
PROMIS Emotional Support
PROMIS Fatigue
PROMIS Global Mental Health
PROMIS Satisfaction with Participation in Discretionary Social Activities

Neurodevelopment (48)

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	ACCPCT1 ACCPCT2 BIASSTN CORSTN5 CORSTN6 CORSTN7 CORSTN8 DISCSTN FPSTN6 HITSTN5 INTSTN3 LDRZSCR REPSTN4 SDRZSCR SEMSTN SERSTN SUBSTN TDRSTN TLSTSTN
Children's Memory Scale
Connor's Continuous Performance Test II
Delis-Kaplan Executive Function System (D-KEFS)	CWCOMPS CWCON1S CWCON2S CWCON3S CWCON4S CWCONTA CWCONTB CWCONTC TMCOMPS TMCON1S TMCON2S TMCON3S TMCON4S TMCON5S TMCONTA TMCONTB TMCONTC TMCONTD TMCONTE TQSCLA TQSCLB TQSCLC TTACHVS VFCN3AS VFCN3BS VFCON1S VFCON2S VFCSCF4 VFLFCF4
NeuroQOL Cognitive Function
Peabody Picture Vocabulary Test (PPVT)

Neuropsychological (285)

Data Element	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)	MMSETOT
Oral Verbal Fluency Test
PROMIS Cognitive Function
Purdue Pegboard (SPA version)
Test of Everyday Attention (TEA)	ECD ECR L MS1 MS2 TS TSC VE1 VE2
Vineland Adaptive Behavior Summary
Wechsler Intelligence Scales	ASSDY CONFINT DIFFP DIFFQ DIFFR DIFFS DIFFT DIFFU DIFFV FRQDIFA FRQDIFB FRQDIFC FRQDIFD FRQDIFE FRQDIFF FRQDIFG FRQDIFH FRQDIFI FRQDIFJ FRQDIFK FRQDIFL FRQDIFM FRQDIFN FRQDIFP FRQDIFQ FRQDIFR FRQDIFS FRQDIFT FRQDIFU FRQDIFV FSIQCON FSIQIND FSIQIND FSIQPCT FSIQSUM FULLSS LEVEL1 LEVEL2 MDIFFA MDIFFB MDIFFC MDIFFD MDIFFE MDIFFF MDIFFG MDIFFH MDIFFI MDIFFJ MDIFFK MDIFFL MDIFFM MDIFFN MEANA MEANB MEANC MEAND MEANE MEANF MEANG MEANH MEANI MEANJ MEANK MEANL MEANM MEANN PERFA PERFC PERFE PERFG PERFJ PERFL PERFN PERFS PIQ_P PIQCON PIQIND PIQIND PIQIND_LE85 PIQPCT PIQSUM POA POE POG POI_Q POI_S POI_U POICON POIIND POIIND POIPCT POISUM POS PSC PSI_S PSI_T PSI_V PSICON PSIIND PSIIND PSIPCT PSISUM PSL PSS PSSQ1 PSSQ10 PSSQ2 PSSQ3 PSSQ4 PSSQ5 PSSQ6 PSSQ7 PSSQ8 PSSQ9 PSSSUMSCORE RAWA RAWB RAWC RAWD RAWE RAWF RAWG RAWH RAWI RAWJ RAWK RAWL RAWM RAWN SCALEA1 SCALEA2 SCALEB1 SCALEB2 SCALEC1 SCALEC2 SCALED1 SCALED2 SCALEE1 SCALEE2 SCALEF1 SCALEF2 SCALEG1 SCALEG2 SCALEH1 SCALEH2 SCALEI1 SCALEI2 SCALEJ1 SCALEJ2 SCALEK1 SCALEK2 SCALEL1 SCALEL2 SCALEM1 SCALEM2 SCALEN1 SCALEN2 STATA STATB STATC STATD STATE STATF STATG STATH STATI STATJ STATK STATL STATM STATN STATP STATQ STATR STATS STATT STATU STATV STRWEKA STRWEKB STRWEKC STRWEKD STRWEKE STRWEKF STRWEKG STRWEKH STRWEKI STRWEKJ STRWEKK STRWEKL STRWEKM STRWEKN VCB VCD VCI VCI_Q VCI_R VCI_T VCICON VCIIND VCIIND VCIPCT VCISUM VCS VERBB VERBD VERBF VERBH VERBI VERBK VERBM VERBS VIQ_P VIQCON VIQIND VIQIND VIQPCT VIQSUM WAISPIQIND1 WMF WMH WMH WMI_R WMI_U WMI_V WMICON WMIIND WMIIND WMIPCT WMISUM WMM WMS
Wechsler Memory Scale	ADINDEX AIINDEX ARDINDX GMINDEX IMINDEX VDINDEX VIINDEX
Wisconsin Card Sorting Test	P21TSCR10 P21TSCR10NUM P21TSCR12 P21TSCR12NUM P21TSCR3 P21TSCR3NUM P21TSCR4 P21TSCR4NUM P21TSCR5 P21TSCR5NUM P21TSCR6 P21TSCR6NUM P21TSCR7 P21TSCR7NUM P21TSCR8 P21TSCR8NUM P21TSCR9 P21TSCR9NUM P23TSCR10 P23TSCR10NUM P23TSCR12 P23TSCR12NUM P23TSCR3 P23TSCR3NUM P23TSCR4 P23TSCR4NUM P23TSCR5 P23TSCR5NUM P23TSCR6 P23TSCR6NUM P23TSCR7 P23TSCR7NUM P23TSCR8 P23TSCR8NUM P23TSCR9 P23TSCR9NUM
Woodcock-Johnson Revised, Tests of Achievement
Woodcock-Johnson, Revised, Tests of Cognitive Ability

Pain (0)

Psychosocial (0)

Physical Function (0)

Quality of Care (0)

Quality of Life (13)

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
PROMIS Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey	P21AGG_MENT P21AGG_PHYS P23AGG_MENT P23AGG_PHYS SFQ1 SFQ10 SFQ11A SFQ11B SFQ11C SFQ11D SFQ6 SFQ7 SFQ8

Sleep (0)

Technology Support (0)

Study Documentation Select All	1. printSpecs_NP_MRIANLY_2009_07_24_13_46_Redacted 2. printSpecs_NP_NEWMRIANLY_2012_02_28_16_53_Redacted 3. printSpecs_PATIENT_2012_02_28_16_53_Redacted 4. printSpecs_AE2_Deidentified 5. printSpecs_CMED_II_Deidentified 6. printSpecs_LABS_II_Deidentified 7. printSpecs_NP_NEWMRIANLY_II_Deidentified 8. printSpecs_PATIENT_II_Deidentified 9. printSpecs_TRANS_II_Deidentified 10. 2008July11_V12.0 CLEAN 11. July2009_NP_II_SIM_v1
Forms Select All	NP_II_aCRF_17Jun2009

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