Details - CureSickleCell

Study ID	1006
Name	Hematopoietic Cell Transplant for Sickle Cell Disease
Contact Email	meapen@mcw.edu
Acronym	HCT for SCD
Period	ongoing
Design	Registry of patients that have undergone blood and marrow transplant
Study PI	Mary M. Horowitz
Institution	Medical College of Wisconsin
URL	https://www.cibmtr.org/Studies/Pages/index.aspx
CTGovID	https://clinicaltrials.gov/ct2/show/NCT01166009
Funding Agency	NHLBI

Overview	The data provided by CIBMTR represents patients who underwent first allogenic HCT (Hemopoetic stem Cell Transplant) for Sickle Cell Disease in the US up to 2017 and reported to the CIBMTR
Focus Areas	1. Acute graft versus host disease (grade II-IV) 2. Chronic graft versus host disease 3. Secondary malignancy
Outcomes	1. Overall Survival 2. Event-free survival (graft failure or death as event) 3. Neutophil engraftment 4. Platelet Recovery

Data Location	BioLINCC, BioData Catalyst
Biospecimen Available	N/A
Data Consent	Consented data may be shared, check individual consent form for specific subject type (donor, recipient, adult, minor, autologous, allogeneic)
Biospecimen Consent	Consented samples may be shared, check individual consent form for specific subject type (donor, recipient, adult, minor, autologous, allogeneic).
Contact Consent	Yes, with permission on consent
Genomic Data	No

Age Range	0-99
No. Participants	1518
Inclusion Criteria	1. First Allogeneic HCT 2. Sickle Cell Disease indication 3. Conducted in USA only
Exclusion Criteria	1. Cases where consent for use in research is not provided 2. Cases where no follow up data was provided

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Clinical status (2)

Behavior (0)

Blood (2)

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

Cancer (0)

Cardiovascular (0)

Digestive (0)

Endocrine (0)

Family MedHx (0)

General Health (0)

Genitourinary (0)

Immune (0)

Lymphatic (0)

Medical Event (0)

Medical History (0)

Mental Health (0)

Musculoskeletal (0)

Neurodevelopmental (0)

Neurologic (0)

Nutritional and Metabolic (0)

Ocular (0)

Oral (0)

Pain (0)

Reproductive (0)

Respiratory (0)

Skin (0)

Sleep (0)

Surgery History (0)

Demographics (5)

Data Element	Variables
Address
Age	age agegpff
Ethnic Group	ethnicit
Gender	sex
Language
National Origin
Nuclear Family
Race	racegp

Social Determinants of Health (SDoH) (0)

Socioeconomic Status (0)

Environmental Exposure (0)

Exposure (0)

Health Care (0)

Acute Care Utilization (0)

Healthcare utilization (0)

Health Services (0)

Hospitalization (0)

SCD Management (0)

Imaging (0)

Angiogram (0)

CT Scan (0)

Echocardiogram (0)

Electrocardiogram (ECG) (0)

Electrodiagnosis (0)

General Imaging (0)

MRI/MRA (0)

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 (1)

General Health (0)

Pain (0)

Patient Functioning (1)

Data Element	Variables
Cognitive Functioning
Emotional Functioning
Physical Functioning	kps
School Functioning
Social Functioning

SCD (0)

Tests (19)

Biopsy (0)

Blood (18)

Data Element	Variables
Blood Differential Test
Blood Gases
Blood Smear
Blood Typing
Coagulation Test
Complete Blood Count
Comprehensive Metabolic Panel (CMP)	salbmuln salbnunt salbprdt salbprkw salbumpr salbunit screatpr screauln screnunt screprdt screprkw screunit
Enzyme
General
Hemoglobin Electrophoresis	hb1pr hb1prkw hb1unpr hbeppshi hctfpr subdis1f
Iron

Cardiovascular (0)

Genitourinary (0)

Immune (0)

Microbiology Culture (1)

Data Element	Variables
Blood Culture	funghxpr
Microbiology Culture

Musculoskeletal (0)

Neurologic (0)

Ocular (0)

Other (0)

Physical Exam (0)

Reproductive (0)

Respiratory (0)

Therapeutics (128)

Medication (0)

Surgery (0)

Transfusion (0)

Transplantation (128)

Data Element	Variables
Conditioning	atgf condgrp_final condgrpf
Transplantation	acspr acspshi adialyhi adiastls agvhd anc anxirxhi arrhyth_type arrhythi avnpshi cadpshi catapshi cdiastls cgvhd chfpshi ckdnpshi cnshemhi dead deprrxhi diabrxhi diabstls donorf dvtcathi dvtpehi dwoagvhd dwoanc dwocgvhd dwogf dwoplatelet efs eintubhi encephhi exchtfpr extubahi fibropr gf godypshi graftype grwdpshi grwdrxhi gvhd_final hctcigpf hcyspshi hla_final htnrxhi htnstls hylirxhi hylistls hyporxhi infapshi intubapr intvscdmal intxadial intxagvhd intxanc intxanx intxarrhyth intxavn intxcata intxcdial intxcgvhd intxchf intxcns intxcyst intxdepr intxdiab intxdvt intxenc intxgf intxghd intxgod intxhtn intxhylip intxhypo intxinfap intxintub intxiron intxmucos intxneuro intxosteo intxothorgsp intxpanc intxplatelet intxptsd intxseiz intxstroke intxsurv intxtma intxvod ipnpshi iron_trt ironrxhi kpspt livbxpr mucorxhi nacs2yr neurophi omsgrdhi osteophi ostfxhi ostjawhi othorgpshi pancpshi platelet ptsdrxhi pulmabhi rbctrfpr rcmvpr scatxrsn scdmal_final seizpshi snephrhi snephrpr strkpshi strokehi strokepr tmapshi tmarslhi txtype voc2ypr vocfrqpr vocpshi vod yeargpf yeartx

Treatment (0)

Study Publications

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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 (0)

Quality of Life (0)

Sleep (0)

Technology Support (0)

Study Documentation Select All	HCT_for_SCD_Data_Dictionary
Forms Select All	1. Confirmation_of_HLA_Typing 2. Sickle_Cell_Anemia_Pre-HSCT_Data 3. Sickle_Cell_Anemia_Post-HSCT_Data 4. Pre-Transplant_Essential_Data 5. Post-Transplant_Essential_Data 6. Recipient_Baseline_Data 7. Disease_Classification 8. Post-HCT_Follow-Up_Data

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