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<p>The Iranian Pediatric Hematopoietic Stem Cell Transplantation Registry (IPED-HSCT) was established to enhance data collection, improve patient outcomes, and support clinical research in pediatric hematopoietic stem cell transplantation. This study aimed to assess the feasibility and reliability of implementing a standardized registry in pediatric settings. A community-based participatory study was conducted across three pediatric HSCT centers in Iran. The registry development involved a multi-phase approach, including pilot testing and the implementation of a web-based system. Data were collected from fifty pediatric patients who underwent HSCT for both malignant and non-malignant conditions, with a focus on data completeness and user satisfaction. Statistical analyses were performed using IBM SPSS Statistics. The registry achieved a data completeness rate exceeding 90%, with a participant demographic of 31 males (62%) and 19 females (38%). Rigorous quality control measures and real-time validation rules were implemented, enhancing data reliability. User feedback indicated high satisfaction with the platform’s design and training sessions. Challenges included variations in long-term follow-up data collection across centers. The IPED-HSCT Registry demonstrates that establishing a robust pediatric HSCT registry is feasible even in resource-limited settings. Its innovative features offer a scalable model for similar initiatives in developing countries. Future research should focus on ensuring long-term sustainability and fostering international collaborations to improve pediatric HSCT outcomes globally. not applicable. </p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年11月27日

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  • Bibi Shahin Shamsian,
  • Nader Momtazmanesh,
  • Vahide Zeinali,
  • Arezou Sayad,
  • Fatemeh Ordoo,
  • Sharareh Kamfar

摘要

The Iranian Pediatric Hematopoietic Stem Cell Transplantation Registry (IPED-HSCT) was established to enhance data collection, improve patient outcomes, and support clinical research in pediatric hematopoietic stem cell transplantation. This study aimed to assess the feasibility and reliability of implementing a standardized registry in pediatric settings. A community-based participatory study was conducted across three pediatric HSCT centers in Iran. The registry development involved a multi-phase approach, including pilot testing and the implementation of a web-based system. Data were collected from fifty pediatric patients who underwent HSCT for both malignant and non-malignant conditions, with a focus on data completeness and user satisfaction. Statistical analyses were performed using IBM SPSS Statistics. The registry achieved a data completeness rate exceeding 90%, with a participant demographic of 31 males (62%) and 19 females (38%). Rigorous quality control measures and real-time validation rules were implemented, enhancing data reliability. User feedback indicated high satisfaction with the platform’s design and training sessions. Challenges included variations in long-term follow-up data collection across centers. The IPED-HSCT Registry demonstrates that establishing a robust pediatric HSCT registry is feasible even in resource-limited settings. Its innovative features offer a scalable model for similar initiatives in developing countries. Future research should focus on ensuring long-term sustainability and fostering international collaborations to improve pediatric HSCT outcomes globally. not applicable.