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Establishing a national pediatric stem cell transplantation registry in Iran addressing implementation and data

Bibi Shahin Shamsian1, Nader Momtazmanesh1, Vahide Zeinali2

  • 1Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children's Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Scientific Reports
|November 27, 2025
PubMed

Insights

Establishing the Iranian Pediatric Hematopoietic Stem Cell Transplantation Registry (IPED-HSCT) proved feasible, achieving over 90% data completeness. This initiative offers a scalable model for pediatric stem cell transplant registries in developing nations.

Area of Science:

  • Pediatric Hematology
  • Stem Cell Transplantation
  • Health Informatics

Background:

  • Pediatric hematopoietic stem cell transplantation (HSCT) requires robust data collection for research and improved outcomes.
  • The Iranian Pediatric Hematopoietic Stem Cell Transplantation Registry (IPED-HSCT) was initiated to address this need.
  • Standardized registries are crucial for advancing pediatric HSCT care.

Purpose of the Study:

  • To evaluate the feasibility and reliability of implementing a standardized pediatric HSCT registry.
  • To assess data completeness and user satisfaction within the IPED-HSCT Registry.
  • To explore the potential of the IPED-HSCT Registry as a model for resource-limited settings.

Main Methods:

  • A community-based participatory approach was used across three Iranian pediatric HSCT centers.
  • A multi-phase registry development included pilot testing and a web-based system implementation.
  • Data from 50 pediatric HSCT patients (malignant and non-malignant conditions) were collected and analyzed using SPSS.

Main Results:

  • The IPED-HSCT Registry achieved over 90% data completeness.
  • High user satisfaction was reported regarding the platform design and training.
  • Participant demographics included 62% males and 38% females.

Conclusions:

  • A robust pediatric HSCT registry is feasible, even in resource-limited environments.
  • The IPED-HSCT Registry provides a scalable model for similar initiatives globally.
  • Future efforts should prioritize long-term sustainability and international collaboration to enhance pediatric HSCT outcomes.

Keywords:
Hematopoietic stem cell transplantationPediatricsRegistries

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