Details - CureSickleCell

Study ID	1020
Name	Comprehensive Sickle Cell Centers' (CSCC) C-Data Project
Contact Email	slieff@rhoworld.com
Acronym	CSCC-C-Data
Period	2005 - 2008
Design	Observational cohort study
Study PI	Susi Lieff
Institution	Statistics and Data Management Center (SDMC) (RhoFed)
URL	https://clinicaltrials.gov/ct2/show/NCT00529061
CTGovID	https://clinicaltrials.gov/ct2/show/NCT00529061
Funding Agency	NHLBI

Overview	The purpose of this study is to gather medical information from children and adults with SCD and establish a database so that researchers can contact people to participate in future SCD research studies.
Focus Areas	1. To gather medical information about a large number of people with SCD over a long period of time 2. To identify potential participants for future SCD clinical trials 3. To collect information about how SCD affects quality of life 4. To evaluate the relationship between SCD patients' characteristics and medical events
Outcomes	1. Quality of Life 2. SCD Pain

Data Location	RTI International
Biospecimen Available	N/A
Data Consent	Data sharing via BioLINCC
Biospecimen Consent	NA
Contact Consent	NA
Genomic Data	No

Age Range	0-99
No. Subjects	3640
Inclusion Criteria	1. Diagnosis of SCD 2. Evaluated within the 24 months prior to study entry in the hospital or clinical setting 3. Expected to return episodically or regularly for care at one of the CSCCs
Exclusion Criteria	1. Deceased CSCC patient 2. Inactive CSCC patient

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Clinical status (336)

Behavior (19)

Data Element	Variables
Substance Use	ANYALCO ANYALCO_ UNK ANYTOB ANYTOB_ UNK BEER_R BEERFR CIGAR_R CIGARFR CIGET_R CIGETFR CURALCO CURALCO_ UNK CURTOB CURTOB_ UNK DRINK_R DRINKFR SNUF_R WINE_R WINEFR

Blood (21)

Data Element	Variables
Acute Anemic Episode	COND4 COND4_UNK COND4YY
Aplastic Crisis	COND1 COND1_UNK COND1YY E_AN1 E_AN1_SUM H_AN1 H_AN1_SUM
Bleeding
Other Blood Problem	COND2 COND2_UNK COND2YY COND3_UNK COND3YY E_AN2 E_AN2_SUM H_AN3 H_AN3_SUM
Sickle Cell Disease	DIAG_BY_ NB_ SCREEN_ UNK DIAG_BY_ NB_SCREEN

Cancer (0)

Cardiovascular (14)

Data Element	Variables
Aneurysm
Cardiac Failure	E_CARF E_CARF_ SUM H_CARF H_CARF_ SUM
Cardiovascular Problem	H_CA2 H_CA2_SUM
Heart Problem	COND5 COND5_UNK COND5YY COND6 COND6_UNK COND6YY E_CA3 E_CA3_SUM

Digestive (39)

Data Element	Variables
Gastrointestinal Problem	COND15 COND15_ UNK COND15YY COND16 COND16_ UNK COND16YY COND19 COND19_ UNK COND19YY E_FEVER1_ SUM GBD GBD_UNK GBDYY H_GBD H_GBD_SUM H_GI1 H_GI1_SUM H_GI2 H_GI2_SUM H_GI5 H_GI5_SUM
Hepatitis	COND20 COND20_ UNK COND20YY
Liver Problem	COND17 COND17_ UNK E_GI3 E_GI3_SUM E_GI4 E_GI4_SUM E_GI6 E_GI6_SUM E_LDHF E_LDHF_SUM E_LDHS E_LDHS_ SUM LDHS LDHS_UNK LDHSYY

Endocrine (1)

Data Element	Variables
Diabetes Mellitus	E_DIABETES
Endocrine Problem

Family MedHx (2)

Data Element	Variables
Family MedHx	SIBNSCD_R SIBWSCD_R

General Health (5)

Data Element	Variables
General Health	SF36_N_GEN SF36_SFQ1 SF36_SFQ2 SF36_SFQ6 T_GEN

Genitourinary (30)

Data Element	Variables
Genitourinary Problem	COND37 COND37_ UNK COND37YY H_RN3 H_RN3_SUM
Kidney Problem	COND35 COND35_ UNK COND35YY COND36 COND36_ UNK COND36YY COND39 COND39_ UNK COND39YY COND40 COND40_ UNK COND40YY H_RN1 H_RN1_SUM H_RN6 H_RN6_SUM
Priapism	COND38 COND38_ UNK COND38YY E_RN4 E_RN4_SUM H_RN4 H_RN4_SUM
Renal Dialysis History	E_RDD E_RDD_SUM

Immune (4)

Data Element	Variables
Fever	E_ DIABETES_ SUM E_FEVER1 H_FEVER1 H_FEVER1_ SUM
HIV Infection
Immune Problem
Infection
Vaccination

Lymphatic (10)

Data Element	Variables
Sarcoidosis
Spleen Problem	COND41 COND41_ UNK COND41YY COND42 COND42_ UNK COND42YY E_SPL1 E_SPL1_SUM H_AN4 H_AN4_SUM

Medical Event (16)

Data Element	Variables
Adverse event
Death	TERM_ AUTOPNA TERM_ AUTOPSY TERM_ DIEHOSP TERM_ PRIMARY TERM_ SANEM TERM_ SECDCAU TERM_ SHEPF TERM_ SMALIG TERM_ SOTHR TERM_ SRENAL TERM_ SRESP TERM_ SSEPSIS TERM_ SSPLEN TERM_ SSYSFL TERM_SCAR TERM_SCNS
Disability Status
Hospitalization
Medical Event
Serious Adverse Event

Medical History (0)

Mental Health (0)

Musculoskeletal (15)

Data Element	Variables
Musculoskeletal Problem	COND21 COND21_ UNK COND21YY COND23 COND23_ UNK COND23YY H_MU1 H_MU1_SUM
Osteomyelitis	COND24 COND24_ UNK COND24YY E_MU4 E_MU4_SUM H_MU4 H_MU4_SUM
Osteonecrosis
Rheumatic Diseases

Neurodevelopmental (0)

Neurologic (33)

Data Element	Variables
Meningitis	COND44 COND44_ UNK COND44YY H_BAC1 H_BAC1_ SUM
Neurologic Event
Seizure	COND9 COND9_UNK COND9YY H_CNS1 H_CNS1_ SUM
Stroke	COND10 COND10_ MISS COND10_ UNK COND10YY COND11 COND11_ UNK COND11YY COND12 COND12_ UNK COND12YY COND14 COND14_ UNK COND14YY E_CNS2 E_CNS2_ SUM E_CNS3 E_CNS3_ SUM E_CNS4 E_CNS4_ SUM H_CNS3 H_CNS3_ SUM H_CNS6 H_CNS6_ SUM
Transient Ischemic Attack

Nutritional and Metabolic (6)

Data Element	Variables
Nutritional and Metabolic	COND43 COND43_ MISS COND43_ UNK COND43YY IRONOV IRONOV_UNK

Ocular (5)

Data Element	Variables
Ocular Problem	COND25 COND25_ UNK COND25YY E_OC1 E_OC1_SUM
Sickle Retinopathy

Oral (0)

Pain (34)

Data Element	Variables
Abdominal Pain
General Pain	COND27 COND27_ MISS COND27_ UNK COND28 COND28_ UNK COND28YY COND29 FUNPR_ PHYFP7 PAINCR_ PAINNOW PAINCR_ PAINWK PAINPR_ PAINNOW PAINPR_ PAINWK SF36_SFQ7
Headache	HEAD1 HEAD2 HEAD3 HEADACH HEADACH_ UNK
Management	E_PN3 E_PN3_SUM EPISNO_C H_PN3 H_PN3_SUM PAINNO PAINVIS PAINVIS_UNK SCPAINY_C
Pain Attack
Skeletal and Joint Pain	COND22 COND22_ UNK COND22YY E_MU2 E_MU2_SUM H_MU2 H_MU2_SUM

Reproductive (12)

Data Element	Variables
Birth Outcome	FULLB_C LIVEB_C
Gestational Age
Menstruation
Pregnancy	ABORT_C CURPREG CURPREG_ UNK EVPREG EVPREG_ UNK FPATNA LIVEC_C MISSCAR_C PREGPY PREMB_C
Reproductive Behavior

Respiratory (31)

Data Element	Variables
Acute Chest Syndrome	COND29_ UNK COND29YY E_PUL1 E_PUL1_SUM H_PUL1 H_PUL1_SUM
Asthma
Lung Disease	COND30 COND30_ UNK COND30YY COND31 COND31_ UNK COND31YY COND32 COND32_ UNK COND33 COND33_ UNK COND33YY COND34 COND34_ UNK COND34YY E_LDPF E_LDPF_SUM E_PUL4 E_PUL4_SUM E_PUL6 E_PUL6_SUM H_PUL6 H_PUL6_SUM LDPF LDPF_UNK LDPFYY
Other Respiratory Problem

Skin (2)

Data Element	Variables
Skin Problem	H_MU3 H_MU3_SUM

Sleep (13)

Data Element	Variables
Sleep Problem	FATIGCR_ SLEEP1 FATIGCR_ SLEEP2 FATIGCR_ SLEEP3 FATIGCR_ SLEEP4 FATIGCR_ SLEEP5 FATIGCR_ SLEEP6 FATIGPR_ SLEEP1 FATIGPR_ SLEEP2 FATIGPR_ SLEEP3 FATIGPR_ SLEEP4 FATIGPR_ SLEEP5 FATIGPR_ SLEEP6 FUNPR_ EMOFP4

Surgery History (24)

Data Element	Variables
Cardiovascular
Digestive	CHOL CHOL_UNK CHOLYY
Genitourinary	PLINE PLINE_MISS PLINE_UNK PLINEFR PLINEYY RPLINE RPLINE_UNK RPLINFR RPLINYY
Lymphatic	SPLEN SPLEN_UNK SPLENYY TONSL TONSL_UNK TONSLYY
Musculoskeletal	HIPCO HIPCO_UNK HIPCOYY HIPR HIPR_UNK HIPRYY
Ocular
Respiratory
Surgery History

Demographics (34)

Demographics (20)

Data Element	Variables
Address
Age	AGE_ CATQOL AGE_CAT AGE_CAT AGE_CAT AGE_GROUP AGE_GROUP AGE_GROUP AGECAT_HS
Ethnic Group	ETHNIC ETHNIC ETHNIC RACE_ ETHNIC
Gender	GENDER GENDER GENDER
Language
National Origin
Nuclear Family	SIBLNO_C
Race	RACE RACE RACE RACE_ ETHNIC

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (14)

Data Element	Variables
Annual Income	INCOMEQ INCOMEQ_ UNK
Education	HIGHGRD_R SCHOOL STUSTAT
Employment Status	EMPLOY
Household	INDGT19_R INDLT19_R
Insurance	MEDICAI MEDICAR NONEINS OTHINS PRIVATE PSQ_FA
Marital Status

Environmental Exposure (0)

Exposure (0)

Health Care (69)

Acute Care Utilization (27)

Data Element	Variables
Facility Type	SCHLTH SCHLTH_ UNK SCTIME1_R
Provider Type
Quality of Care	PSQ_AC PSQ_CM PSQ_GS PSQ_IM PSQ_TD PSQ_TQ SFPS_PSQ1 SFPS_PSQ10 SFPS_PSQ11 SFPS_PSQ12 SFPS_PSQ13 SFPS_PSQ14 SFPS_PSQ15 SFPS_PSQ16 SFPS_PSQ17 SFPS_PSQ18 SFPS_PSQ2 SFPS_PSQ3 SFPS_PSQ4 SFPS_PSQ6 SFPS_PSQ8 SFPS_PSQ9
Visit	CHTRLAB NUMVIS

Healthcare utilization (33)

Data Element	Variables
Country of Care
Quality of Care	PHSM_ COMM1 PHSM_ COMM2 PHSM_ COMM3 PHSM_ COMM4 PHSM_ COMM5 PHSM_ EMOT1 PHSM_ EMOT2 PHSM_ EMOT3 PHSM_ EMOT4 PHSM_ INCFAM1 PHSM_ INCFAM2 PHSM_ INCFAM3 PHSM_ INCFAM4 PHSM_ SATIS1 PHSM_ SATIS2 PHSM_ SATIS3 PHSM_ SKILL1 PHSM_ SKILL2 PHSM_ SKILL3 PHSM_COMM PHSM_EMO PHSM_FAM PHSM_INFO PHSM_INFO1 PHSM_INFO2 PHSM_INFO3 PHSM_INFO4 PHSM_INFO5 PHSM_SATIS PHSM_TECH PHSM_TOT SFPS_PSQ5 SFPS_PSQ7

Hospitalization (9)

Data Element	Variables
Final Diagnosis	E_OTH1 E_OTH1_ SUM GENOTYPE H_OTH1 H_OTH1_ SUM
Hospitalization	ANY_ENCNT ANY_HOSP TOT_NUM_ ENCNT TOT_NUM_ HOSP
ICU

Imaging (40)

Angiogram (0)

CT Scan (0)

Echocardiogram (6)

Data Element	Variables
Echocardiogram	ECH2Y ECH2Y_UNK ECH2YRS ECHO ECHO_UNK ECHORES

Electrocardiogram (ECG) (6)

Data Element	Variables
Electrocardiogram (ECG)	EKG EKG_UNK EKG2Y EKG2Y_UNK EKG2YRS EKGRES

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (15)

Data Element	Variables
Brain	MRA MRA_UNK MRA2Y MRA2Y_UNK MRA2YRS MRARES MRI MRI_UNK MRI2Y MRI2Y_UNK MRI2YRS MRIRES
Heart
Hip
Liver	SQUID SQUIDDY SQUIRES

Nuclear Medicine Imaging (0)

PET scan (0)

Transcranial Doppler (TCD) (13)

Data Element	Variables
Brain	COND13 COND13_ UNK COND13YY E_CNS5 E_CNS5_ SUM H_CNS5 H_CNS5_ SUM TCD TCD_UNK TCD2Y TCD2Y_UNK TCD2YRS TCDRES

Ultrasound (0)

X-Ray (0)

Parent/Caretaker (2)

Demographics (0)

Psychosocial (0)

Quality of Life (2)

Data Element	Variables
Quality of Life	PDAYMIS_ MISS PDAYMIS_C

Quality of Life (141)

General Health (0)

Pain (0)

Patient Functioning (136)

Data Element	Variables
Cognitive Functioning	FATIGCR_ COGNI_ SCORE FATIGCR_ COGNI1 FATIGCR_ COGNI2 FATIGCR_ COGNI3 FATIGCR_ COGNI4 FATIGCR_ COGNI5 FATIGCR_ COGNI6 FATIGPR_ COGNI_ SCORE FATIGPR_ COGNI1 FATIGPR_ COGNI2 FATIGPR_ COGNI3 FATIGPR_ COGNI4 FATIGPR_ COGNI5 FATIGPR_ COGNI6 FATIGPR_ TOTAL_ SCORE
Emotional Functioning	FUNCR_ EMOFC_ SCORE FUNCR_ EMOFC1 FUNCR_ EMOFC2 FUNCR_ EMOFC3 FUNCR_ EMOFC4 FUNCR_ EMOFC5 FUNCR_ SOCFC1 FUNCR_ SOCFC2 FUNCR_ SOCFC3 FUNCR_ SOCFC4 FUNCR_ SOCFC5 FUNPR_ EMOFP_ SCORE FUNPR_ EMOFP1 FUNPR_ EMOFP2 FUNPR_ EMOFP3 FUNPR_ EMOFP5 SF36_MCS SF36_N_ MENT SF36_N_EMO SF36_SFQ5A SF36_SFQ5B SF36_SFQ5C SF36_SFQ9A SF36_SFQ9B SF36_SFQ9C SF36_SFQ9D SF36_SFQ9E SF36_SFQ9F SF36_SFQ9G SF36_SFQ9H SF36_SFQ9I T_EMO T_MENT
Physical Functioning	FATIGCR_ GEN_SCORE FATIGCR_ GEN1 FATIGCR_ GEN2 FATIGCR_ GEN3 FATIGCR_ GEN4 FATIGCR_ GEN5 FATIGCR_ GEN6 FATIGCR_ SLEEP_ SCORE FATIGCR_ TOTAL_ SCORE FATIGPR_ GEN_SCORE FATIGPR_ GEN1 FATIGPR_ GEN2 FATIGPR_ GEN3 FATIGPR_ GEN4 FATIGPR_ GEN5 FATIGPR_ GEN6 FATIGPR_ SLEEP_ SCORE FUNCR_ PHYCS FUNCR_ PHYFC_ SCORE FUNCR_ PHYFC1 FUNCR_ PHYFC2 FUNCR_ PHYFC3 FUNCR_ PHYFC4 FUNCR_ PHYFC5 FUNCR_ PHYFC6 FUNCR_ PHYFC7 FUNCR_ PHYFC8 FUNPR_ PHYFP_ SCORE FUNPR_ PHYFP1 FUNPR_ PHYFP2 FUNPR_ PHYFP3 FUNPR_ PHYFP4 FUNPR_ PHYFP5 FUNPR_ PHYFP6 FUNPR_ PHYFP8 SF36_ SFQ11A SF36_ SFQ11B SF36_ SFQ11C SF36_ SFQ11D SF36_N_ ROLE SF36_N_ VITAL SF36_N_PAIN SF36_N_PHY SF36_PCS SF36_SFQ3A SF36_SFQ3B SF36_SFQ3C SF36_SFQ3D SF36_SFQ3E SF36_SFQ3F SF36_SFQ3G SF36_SFQ3H SF36_SFQ3I SF36_SFQ3J SF36_SFQ4A SF36_SFQ4B SF36_SFQ4C SF36_SFQ4D SF36_SFQ8 T_PAIN T_PHY T_ROLE T_VITAL
School Functioning	FUNCR_ SCHFC_ SCORE FUNCR_ SCHFC1 FUNCR_ SCHFC2 FUNCR_ SCHFC3 FUNCR_ SCHFC4 FUNCR_ SCHFC5 FUNPR_ SCHFP_ SCORE FUNPR_ SCHFP1 FUNPR_ SCHFP2 FUNPR_ SCHFP3 FUNPR_ SCHFP4 FUNPR_ SCHFP5 FUNPR_ SFUNP1 FUNPR_ SFUNP2 FUNPR_ SFUNP3
Social Functioning	FUNCR_ SOCFC_ SCORE FUNPR_ SOCFP_ SCORE FUNPR_ SOCFP1 FUNPR_ SOCFP2 FUNPR_ SOCFP3 FUNPR_ SOCFP4 FUNPR_ SOCFP5 SF36_N_SOC SF36_SFQ10 T_SOC

SCD (5)

Data Element	Variables
SCD Impact	DAYMISS_C FUNCR_ TOTAL_ SCORE FUNPR_ TOTAL_ SCORE PSYSOCC_ SCORE PSYSOCP_ SCORE
SCD Management

Tests (39)

Biopsy (2)

Data Element	Variables
Biopsy	LIVER LIVRES

Blood (27)

Data Element	Variables
Blood Differential Test
Blood Gases
Blood Smear
Blood Typing	RBCD RBCDOC RBCDOC_ UNK RBCFYA RBCFYB RBCJKA RBCJKB RBCLC RBCLE RBCLEA RBCLEB RBCLK RBCM RBCOTH RBCUC RBCUE RBCUK RBCUNK RBCWARM
Coagulation Test
Complete Blood Count	HGBRS PLATECM PLATERS WBCRS
Comprehensive Metabolic Panel (CMP)
Enzyme
General
Hemoglobin Electrophoresis	GENOTYPE GENOTYPE
Iron	FERRES FERRIT

Cardiovascular (0)

Genitourinary (0)

Immune (0)

Microbiology Culture (0)

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (0)

Physical Exam (4)

Data Element	Variables
Abdomen
Anthropometrics	HT_R HTUNIT WT_R WTUNIT
Cardiovascular
Extremities
General
Liver
Reproductive
Respiratory
Spleen
Vital signs

Reproductive (0)

Respiratory (6)

Data Element	Variables
Pulmonary Function Test	PFT PFT_UNK PFT2Y PFT2Y_UNK PFT2YRS PFTRES
Respiratory Test

Therapeutics (57)

Medication (38)

Data Element	Variables
Antibiotics	PROPH PROPH_UNK PROPPR PROPPR_ UNK
Asthma
Blood Medication History	ANTISIC ANTISIC_UNK ANTISPR ANTISPR_ UNK DESFER DESFER_ UNK DESFPR DESFPR_ UNK IRON_ OTHER_UNK IRON_OTHER IRONPR IRONPR_UNK IRONTH IRONTH_ TYPE
Cardiovascular
Compliance
Current Medication
Depression Medication History	ANTIDEP ANTIDEP_ UNK ANTIDPR ANTIDPR_ UNK
Hydroxyurea	HYDROPR HYDROPR_ UNK HYDROX HYDROX_ UNK
Medication	ALTER ALTER_UNK ALTPR ALTPR_UNK
Neurologic Medication History	ANTICONV ANTICONV_ UNK ANTICPR ANTICPR_ UNK
Pain	NARCO NARCO_UNK NARCPR NARCPR_ UNK
SCD Medication
Sildenafil
Supplements

Surgery (0)

Transfusion (15)

Data Element	Variables
Blood Transfusion	E_TRAN2 E_TRAN2_ SUM H_TRAN2 H_TRAN2_ SUM TRAN TRAN_NUM_ R TRAN_UNK TRANNO TRANPHX TRANPR TRANPR_ UNK TRANS TRANS_UNK
Chronic Transfusion
Transfusion Complications	H_TRAN1 H_TRAN1_ SUM

Transplantation (0)

Treatment (4)

Data Element	Variables
Oxygen	OXYGEN OXYGEN_ UNK OXYGPR OXYGPR_ UNK
Treatment

Study Publications

Health-related quality of life in children with sickle cell disease: a report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium.

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Functional Exercise Capacity (0)

Mental Health (0)

Neurodevelopment (0)

Neuropsychological (0)

Pain (0)

Physical Exam (0)

Psychosocial (0)

Quality of Care (18)

Data Element	Variables
ASCQ-Me Quality of Care (QOC)
Patient Satisfaction Questionnaire (PSQ)	SFPS_PSQ1 SFPS_PSQ10 SFPS_PSQ11 SFPS_PSQ12 SFPS_PSQ13 SFPS_PSQ14 SFPS_PSQ15 SFPS_PSQ16 SFPS_PSQ17 SFPS_PSQ18 SFPS_PSQ2 SFPS_PSQ3 SFPS_PSQ4 SFPS_PSQ5 SFPS_PSQ6 SFPS_PSQ7 SFPS_PSQ8 SFPS_PSQ9

Quality of Life (36)

Data Element	Variables
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 Self-Efficacy for Managing Medications and Treatment
SF-36 Health Survey	SF36_ SFQ11A SF36_ SFQ11B SF36_ SFQ11C SF36_ SFQ11D SF36_SFQ1 SF36_SFQ10 SF36_SFQ2 SF36_SFQ3A SF36_SFQ3B SF36_SFQ3C SF36_SFQ3D SF36_SFQ3E SF36_SFQ3F SF36_SFQ3G SF36_SFQ3H SF36_SFQ3I SF36_SFQ3J SF36_SFQ4A SF36_SFQ4B SF36_SFQ4C SF36_SFQ4D SF36_SFQ5A SF36_SFQ5B SF36_SFQ5C SF36_SFQ6 SF36_SFQ7 SF36_SFQ8 SF36_SFQ9A SF36_SFQ9B SF36_SFQ9C SF36_SFQ9D SF36_SFQ9E SF36_SFQ9F SF36_SFQ9G SF36_SFQ9H SF36_SFQ9I

Sleep (0)

Study Documentation Select All	1. printSpecs_PATIENT_NEW_R_2010_01_18_10_10 2. printSpecs_MH_INTVW_R_2010_01_18_10_10 3. printSpecs_MH_CHART_R_2010_01_18_10_10 4. C-Data Protocol V5.3 Jul 3 2008 CLEAN
Forms Select All	1. C-Data 5.2 annotated CRFs 2. C-Data_Phase5000_Medical_History_I_Page_10 3. C-Data_Phase5000_Enrollment 4. C-Data_Phase5000_Healthcare_Satisfaction_Module_Parent_Report 5. C-Data_Phase5000_Medical_History_I_Hospital_Admissions 6. C-Data_Phase5000_Medical_History_I_Medical_Conditions 7. C-Data_Phase5000_Medical_History_I_Page_1 8. C-Data_Phase5000_Medical_History_I_Selected_Diagnostic_Tests 9. C-Data_Phase5000_Medical_History_I_Selected_Lab_Tests 10. C-Data_Phase5000_Medical_History_I_Selected_Medications 11. C-Data_Phase5000_Medical_History_I_Surgical_History 12. C-Data_Phase5000_Medical_History_I_Transfusion_History 13. C-Data_Phase5000_Medical_History_IIA_Patient_Interview 14. C-Data_Phase5000_Medical_History_IIB_Parent_Interview 15. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Child_Report 16. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Child 17. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Teens 18. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Toddlers 19. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Parent_Report_Young_Child 20. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Teen_Report 21. C-Data_Phase5000_Multidimensional_Fatigue_Scale_Young_Child_Report 22. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Child 23. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Child 24. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Teen 25. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Parent_Young_Child 26. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Teen 27. C-Data_Phase5000_Pediatric_Pain_Questionnaire_Young_Child 28. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Child_Report 29. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Child 30. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Teens 31. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Toddlers 32. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Parent_Report_Young_Child 33. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Teen_Report 34. C-Data_Phase5000_Pediatric_Quality_Life_Inventory_Young_Child_Report 35. C-Data_Phase5000_SF-36_Health_Survey 36. C-Data_Phase5000_Short_Patient_Satisfaction_Questionnaire 37. C-Data_Phase6000_Acute_Chest_Syndrome 38. C-Data_Phase6000_Acute_Renal_Failure 39. C-Data_Phase6000_Acute_Splenic_Sequestration 40. C-Data_Phase6000_Annual__Part_I_Medical_Conditions 41. C-Data_Phase6000_Annual_Part_I_Encounter_Summary 42. C-Data_Phase6000_Annual_Part_I_Medications_Lab_Tests 43. C-Data_Phase6000_Annual_Part_I_Page_1 44. C-Data_Phase6000_Annual_Part_I_Page_9 45. C-Data_Phase6000_Annual_Part_I_Selected_Diagnostic_Tests 46. C-Data_Phase6000_Annual_Part_I_Surgical_Procedures 47. C-Data_Phase6000_Annual_Part_I_Transfusions 48. C-Data_Phase6000_Aplastic_Episode 49. C-Data_Phase6000_Avascular_Necrosis 50. C-Data_Phase6000_Bacteremia_Sepsis_Meningitis 51. C-Data_Phase6000_Chronic_Hypersplenism 52. C-Data_Phase6000_Chronic_Renal_Insufficiency 53. C-Data_Phase6000_Elevated_TCD_Velocities 54. C-Data_Phase6000_Hematuria 55. C-Data_Phase6000_Hepatic_Sequestration 56. C-Data_Phase6000_Intrahepatic_Cholestasis 57. C-Data_Phase6000_Myocardial_Infarction 58. C-Data_Phase6000_Osteomyelitis 59. C-Data_Phase6000_Priapism 60. C-Data_Phase6000_Proteinuria_Nephrotic_Syndrome 61. C-Data_Phase6000_Pulmonary_Embolism 62. C-Data_Phase6000_Pulmonary_Hypertension 63. C-Data_Phase6000_Seizure 64. C-Data_Phase6000_Stroke_Hemorrhagic 65. C-Data_Phase6000_Stroke_Infarctive 66. C-Data_Phase6000_Stroke_Silent_Cerebral_Infarct 67. C-Data_Phase6000_Transient_Ischemic_Attack 68. C-Data_Phase6000_Viral_Hepatitis 69. C-Data_Phase7000_Annual_Part_IIA 70. C-Data_Phase7000_Annual_Part_IIB 71. C-Data_Phase8000_Termination_Transfer

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Study Publications