Chronic gvhd dictionary-eurograft cost action initiative consensus report

Area of Science:

• Hematology
• Transplantation Medicine
• Oncology

Background:

• Chronic graft versus host disease (cGVHD) is a challenging orphan disease following allogeneic hematopoietic stem cell transplantation (alloHSCT).
• Existing cGVHD databases lack standardization, hindering data retrieval and integration.
• International collaboration is crucial for advancing research and clinical management of cGVHD.

Purpose of the Study:

• To establish a standardized, international cGVHD Dictionary for structuring cGVHD databases.
• To reconcile differences in data retrieval across various registries.
• To facilitate the merging of disparate cGVHD databases for comprehensive analysis.

Main Methods:

• Consensus meetings involving the EUROGRAFT consortium, European Society of Blood and Marrow Transplantation (EBMT), US GvHD consortium, and Center for International Bone Marrow Transplant Registry (CIBMTR).
• Inclusion of data from multiple international databases, including NIH, CIBMTR, and EBMT registries.
• Development of a four-part dictionary structure based on consensus and literature evidence.

Main Results:

• A four-part cGVHD Dictionary has been successfully developed.
• The dictionary standardizes data on patient characteristics, transplant details, cGVHD specifics, and patient-reported outcomes.
• This structure facilitates consistent data collection and analysis across different research groups.

Conclusions:

• The cGVHD Dictionary provides a vital standardized framework for global cGVHD research.
• Implementation of the dictionary will enhance data comparability and support collaborative efforts.
• This standardization is expected to accelerate progress in understanding and treating cGVHD.