Project: Common and Well-Documented Alleles 3.0

Project name: Common and Well-Documented Alleles 3.0

Project leader(s):  Jason Dehn (National Marrow Donor Program, Minneapolis, MN USA), Carolyn Katovich Hurley (Georgetown University, Washington DC USA), Jane Kempenich (NMDP), Kim Wadsworth (NMDP)

 

Participating registries:

  • NMDP/Be The Match-US and Mexico
  • DKMS (Germany, Polska, UK, India, Americas)
  • Argentine HSC Donors Registry
  • Czech National Marrow Donors Registry
  • Danish Stem Cell Donors – West
  • Finnish Stem Cell Registry
  • Hellenic Transplant Organization (HTO)
  • India – DATRI
  • Israel-Ezer Mizion BMDR
  • Italian Bone Marrow Donor Registry
  • Kuwait National Stem Cell Registry
  • New Zealand bone marrow registry
  • Norwegian Bone Marrow Donor Registry
  • Central Unrelated Potential Bone Marrow Donor POLTRANSPLANT
  • King Abdullah International Medical Research Center Saudi Arabia
  • The Bone Marrow Donor Programme Singapore
  • Tobias Registry Sweden
  • Swiss Blood Stem Cells
  • Thai National Stem Cell Donor Registry
  • Gift of Life Marrow Registry

 

Detailed project description:

The goal of this international workshop project is to update the previous common and well-documented allele lists using HLA assignments obtained from volunteers of unrelated hematopoietic stem cell donor registries. Twenty registries, located around the world, have already contributed HLA data from over 8 million individuals. The 2012 version of CWD alleles (version 2.0.0) was based on just under 140,000 individuals with 84% of those individuals coming from the United States so this update represents an enormous increase in the information used to assess frequency.

Milestones in years:

2018:

  • Collect HLA data from registries (completed)
  • Collate HLA-A and HLA-DRB1 data including information on previous CWD designations (Mack et al., 2012; Sanchez-Mazas et al., 2017; He et al., 2018) and IPD-IMGT/HLA allele designations and characterizations (completed)

2019:

  • Analyze HLA-A and HLA-DRB1 collated data and set parameters for CWD designations
  • Collate data HLA-B, HLA-C, HLA-DQB1, HLA-DPB1 including information on previous CWD designations and IPD-IMGT/HLA allele designations and characterizations

2020:

  • Complete analysis and CWD assignments
  • Submit publication

2021:

  • Discuss plan for future updates at workshop

 

Patient/sample description and data required:

World Marrow Donor Association unrelated donor registries were invited to participate in sharing HLA data for this study.  Donor HLA typing must have met the following conditions to be included: New volunteer donor recruitment testing within the years of 2012- 2018 regardless of current registry availability status, HLA assignment by sequencing (Sanger or NGS) methods with resolution of at least the G level (i.e., Class I exons 2 and 3/Class II exon 2), volunteers included must be consecutive registrants during the period of time of suitable HLA resolution (not just patient directed testing or directed registry upgrade), all HLA types during that time period must be submitted including those with allelic ambiguities.  Data was provided as a total allele count assigned to a geographic/ancestral/ethnic populations with associated frequency calculation.

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