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Study Detail

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
Grant Number 1U01HL128568-01
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
Study Documentation
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HCT_for_SCD_Data_Dictionary
Forms
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Data ElementVariables
Address
Age age
agegpff
Ethnic Group ethnicit
Gender sex
Language
National Origin
Nuclear Family
Race racegp
Data ElementVariables
Cognitive Functioning
Emotional Functioning
Physical Functioning kps
School Functioning
Social Functioning
Data ElementVariables
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 Typing hb1pr
hb1prkw
hb1unpr
hbeppshi
hctfpr
subdis1f
Iron
Data ElementVariables
Blood Culture funghxpr
Microbiology Culture
Data ElementVariables
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
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