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

Bibi Shahin Shamsian·Nader Momtazmanesh·Vahide Zeinali·Arezou Sayad·Fatemeh Ordoo·Sharareh Kamfar
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Abstract

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.

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HumansRegistriesIranMaleFemaleChildHematopoietic Stem Cell TransplantationAdolescentData AccuracyChild, PreschoolInfantHematopoietic stem cell transplantationPediatricsJournal Article

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Bibi Shahin Shamsian, Nader Momtazmanesh, Vahide Zeinali, Arezou Sayad, Fatemeh Ordoo, Sharareh Kamfar. 2025-11-27. Establishing a national pediatric stem cell transplantation registry in Iran addressing implementation and data quality challenges.. https://doi.org/10.1038/s41598-025-26461-8

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