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Curative Therapies

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St. Pierre, T. G., et al. Single spin-echo proton transverse relaxometry of iron-loaded liver. NMR Biomedicine, 2004
#851202

Garbowski, M. W., Carpenter, J.-P., Smith, G., Roughton, M., Alam, M. H., He, T., Pennell, D. J., & Porter, J. B. (2014). Biopsy-based calibration of T2* magnetic resonance for estimation of liver iron concentration and comparison with R2 Ferriscan. Journal of Cardiovascular Magnetic Resonance, 16, 40.
#851201

Center for International Blood and Marrow Transplant Research (CIBMTR),Form 2450 (R5.0) Post-Transplant Essential Data, 2021
#850801

Voigt, et al. Definitions for a common standard for 2D speckle tracking echocardiography: Consensus document of the EACVI/ASE/Industry Task Force to standardize deformation imaging. European Heart Journal - Cardiovascular Imaging, 16(1), 1-11.
#850201

Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE)
#850901

Prothrombin Time (PT), CPT 85610
#850101

Psychosocial Assessment of Candidates for Transplantation (PACT)
#850301

Center for International Blood and Marrow Transplant (CIBMTR), Form 2030 (R3.0) Sickle Cell Pre-HSCT Data, 2021
#850601

Cure Sickle Cell Initiative (CureSCi) Drug Product Case Report Form and Center for International Blood and Marrow Transplant Research (CIBMTR) Form 2400 (R8.0) Pre-Transplant Essential Data, 2021
#850501

Cure Sickle Cell Initiative (CureSCi) Transplant Conditioning Case Report Form (CRF)
#850401

Thyroid Stimulating Hormone (TSH), CPT 84443
#851101

The Sickle Cell Disease and Cardiovascular Risk—Red Cell Exchange Trial (SCD CARRE)
#851001

Center for International Blood and Marrow Transplant Research (CIBMTR), Form 2450 (R5.0) Post-Transplant Essential Data, 2020
#850701
Scope of Collection
Element Considered Final Measures in Toolkit
Indications for Transplant
Pretransplant Evalution Prothrombin Time
Left Ventricular Global Longitudinal Strain by Speckle Tracking Echocardiography
Determination of Liver Iron Concentration by R2*
Determination of Liver Iron Concentration by Ferriscan
Determination of Liver Fibrosis by Magnetic Resonance Elastography (MRE) (Supplemental Information)
Recurrent Priapism
Psychosocial Assessment of Candidates for Transplantation
Fibrosis Staging of Liver Biopsy (Supplemental Information)
Determination of Liver Fibrosis by Transient Elastography (Supplemental Information)
Myocardia Iron Estimation Using T2* MRI (Supplemental Information)
Description of transplant conditioning regimen Sickle Cell Disease Transplant Conditioning Regimen
Transplant stem cell source Sickle Cell Disease Stem Cell Source and Cell Manipulation
Effect of transplant on donor derived erythropoiesis
Endpoints for curative therapy (complications) White Cell Chimerism and Graft Failure
Graft versus Host Disease
Pretransfusion evaluation
Endpoints for Transfusion Pre-transfusion Antibody Testing
Transfusion Reaction Reporting
Thyroid Stimulating Hormone (hTSH) in Serum
Endpoints for transplant (complications) Determination of Liver Iron Concentration by R2*
Determination of Liver Iron Concentration by Ferriscan
Determination of Liver Fibrosis by Magnetic Resonance Elastography (MRE) (Supplemental Information)
Fibrosis Staging of Liver Biopsy (Supplemental Information)
Determination of Liver Fibrosis by Transient Elastography (Supplemental Information)
Myocardia Iron Estimation Using T2* MRI (Supplemental Information)
Working Group Roster:

WG Members:

Ross Fasano, M.D., Co-Chair
Emory University, Children's Healthcare of Atlanta
Atlanta, GA
Matthew Hsieh, M.D., Co-Chair
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Stella Chou, M.D.
Children's Hospital of Pennsylvania
Philadelphia, PA
Julie Kanter, M.D.
University of Alabama, Birmingham
Birmingham, AL
Emily Meier, M.D.
Indiana Hemophilia and Thrombosis Center
Indianapolis, IN
Rene Romero, M.D.
Emory University, Children's Healthcare of Atlanta
Atlanta, GA
Elizabeth Stenger, M.D.
UPMC Children's Hospital of Pittsburgh
Pittsburgh, PA
Santosh Saraf, M.D.
University of Illinois
Urbana-Champaign, IL

Sickle Cell Disease Panel Liaison, WG Manager and WG Supervisor:

Wayne Huggins, PhD, WG Supervisor
RTI International
Research Triangle Park, NC
Lauren Gridley, MS, WG Manager
RTI International
Research Triangle Park, NC

Consensus Coordinator :

Deborah Maiese, MPA
RTI International
Research Triangle Park, NC

Principal Investigator:

Carol M. Hamilton, PhD
RTI International
Research Triangle Park, NC

Co-Investigator:

Tabitha P. Hendershot, BA
RTI International
Washington, DC

Project Manager:

Amanda Riley, PMP, MBA
RTI International
Research Triangle Park, NC

Project Scientist:

Erin M. Ramos, PhD, MPH
National Human Genome Research Institute (NHGRI)
Bethesda, MD

NIH National Heart, Lung and Blood Institute Liaison:

Traci Mondoro
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

Additional Information:

There is no additional information for this collection.

Measure Protocols Domain/Collection
Noninvasive Determination of Liver Iron Concentration Add to My Toolkit Determination of Liver Iron Concentration by Ferriscan Sickle Cell Disease: Curative Therapies Specialty Collection
Add to My Toolkit Determination of Liver Iron Concentration by R2* Sickle Cell Disease: Curative Therapies Specialty Collection
Graft versus Host Disease Add to My Toolkit Graft versus Host Disease Sickle Cell Disease: Curative Therapies Specialty Collection
Left Ventricular Global Longitudinal Strain Add to My Toolkit Left Ventricular Global Longitudinal Strain by Speckle Tracking Echocardiography Sickle Cell Disease: Curative Therapies Specialty Collection
Pre-transfusion Antibody Reporting Add to My Toolkit Pre-transfusion Antibody Testing Sickle Cell Disease: Curative Therapies Specialty Collection
Prothrombin Time Add to My Toolkit Prothrombin Time Sickle Cell Disease: Curative Therapies Specialty Collection
Psychosocial Impact of Transplantation Add to My Toolkit Psychosocial Assessment of Candidates for Transplantation (PACT) Sickle Cell Disease: Curative Therapies Specialty Collection
Priapism Add to My Toolkit Recurrent Priapism Sickle Cell Disease: Curative Therapies Specialty Collection
Sickle Cell Disease Stem Cell Source Add to My Toolkit Sickle Cell Disease Stem Cell Source and Cell Manipulation Sickle Cell Disease: Curative Therapies Specialty Collection
Sickle Cell Disease Transplant Conditioning Regimen Add to My Toolkit Sickle Cell Disease Transplant Conditioning Regimen Sickle Cell Disease: Curative Therapies Specialty Collection
Thyroid Stimulating Hormone Add to My Toolkit Thyroid Stimulating Hormone (hTSH) in Serum Sickle Cell Disease: Curative Therapies Specialty Collection
Transfusion Reaction Reporting Add to My Toolkit Transfusion Reaction Reporting Sickle Cell Disease: Curative Therapies Specialty Collection
White Cell Chimerism Add to My Toolkit White Cell Chimerism and Graft Failure Sickle Cell Disease: Curative Therapies Specialty Collection