دورية أكاديمية
أعرض في EDS

The first national pediatric immune thrombocytopenia registry in Iran: research protocol and preliminary study results.

التفاصيل البيبلوغرافية
العنوان: The first national pediatric immune thrombocytopenia registry in Iran: research protocol and preliminary study results.
المؤلفون: Kamfar S; Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children's Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran., Haghi S; Department of Hematology and Oncology, School of Medicine, Alborz University of Medical Sciences, Karaj, Iran., Zeinali V; Research Institute for Children's Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran., Tavana PM; Department of pediatrics, Loghman Hakim Hospital, Shahid Beheshti University of Medical Sciences, Tehran, Iran., Arjmand R; Department of Pediatrics, School of Medicine, Alborz University of Medical Sciences, Karaj, Iran., Malek F; Pediatric Congenital Hematologic Disorders Research Center, Research Institute for Children's Health, Shahid Beheshti University of Medical Sciences, Tehran, Iran. malekfatemeh82@gmail.com.
المصدر: BMC health services research [BMC Health Serv Res] 2024 May 28; Vol. 24 (1), pp. 675. Date of Electronic Publication: 2024 May 28.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963 (Electronic) Linking ISSN: 14726963 NLM ISO Abbreviation: BMC Health Serv Res Subsets: MEDLINE
أسماء مطبوعة: Original Publication: London : BioMed Central, [2001-
مواضيع طبية MeSH: Registries* , Purpura, Thrombocytopenic, Idiopathic*/therapy , Purpura, Thrombocytopenic, Idiopathic*/drug therapy, Humans ; Child ; Iran/epidemiology ; Child, Preschool ; Adolescent ; Male ; Female ; Infant ; Pilot Projects
مستخلص: Background: Disease registries are comprehensive databases that record detailed information on patients diagnosed with specific conditions, providing valuable insights into their diagnosis, treatment, and outcomes. This study aims to describe the pilot phase of the national pediatric Immune Thrombocytopenia(ITP) registry (NPITP) in Iran, serving as the inaugural interpretive report.
Methods: This patient-centered software system was implemented as a national program across multiple pediatric centers in Iran. Several focus groups were conducted to establish a minimum data set (MDS) comprising six main classes, 14 sub-classes, and 187 data elements. Following expert consensus on the final data set, a web-based software tool was developed by the dedicated IT team, accessible online and offline via https://disreg.sbmu.ac.ir/q/ITP.html . The registry included children aged between two months and 18 years with a platelet count below 100 × 10 9 /L, based on predefined inclusion criteria.
Results: Within a four-month period, a total of 60 ITP patients were registered, including 41 (68.3%) newly diagnosed cases, 68 (13.6%) persistent cases, and 14 (23.3%) with chronic ITP. The mean age of the registered patients was 55.93 ± 9.72 months. The most frequently observed bleeding symptoms were petechiae (68.3%), purpura (51.6%), and ecchymosis (13.3%). Among the newly diagnosed patients, 20 (33.3%) received intravenous immunoglobulin (IVIG), 17 (28.3%) were treated with prednisolone, and 17 (28.3%) received combined IVIG and steroid therapy. Of all patients, 40 (66.7%) demonstrated a complete response to treatment, while 16 (26.7%) exhibited a partial response. Four patients (6.7%) remained unresponsive to therapy. Treatment-related complications, such as Cushing's syndrome, edema, weight gain, hirsutism, and mood disorders, were reported in 10 patients (16.6%). However, the majority of patients (81.7%) did not experience therapy-related complications.
Conclusion: The pilot phase of the NPITP registry successfully implemented a web-based software tool for data collection, aiming to enhance the quality of care, facilitate clinical research, and support health service planning in the future.
(© 2024. The Author(s).)
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معلومات مُعتمدة: 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences; 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences; 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences; 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences; 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences; 23920 Deputy of research and technology at Shahid Beheshti University of Medical Sciences
فهرسة مساهمة: Keywords: Immune thrombocytopenia; Iran; Minimum data set; Registries
تواريخ الأحداث: Date Created: 20240528 Date Completed: 20240529 Latest Revision: 20240531
رمز التحديث: 20240531
مُعرف محوري في PubMed: PMC11134961
DOI: 10.1186/s12913-024-11102-z
PMID: 38807135
قاعدة البيانات: MEDLINE
الوصف
تدمد:1472-6963
DOI:10.1186/s12913-024-11102-z