Background:
Patient registries use standardized methods to systematically gather uniform data for specific groups of patients managed in clinical practice to evaluate specified outcomes.
Aim:
The objective of this study was to identify and describe structures of the identified thalassemia registries in worldwide and summarize their key characteristics.
Methods:
We reviewed the literature on thalassemia registries. A search of PubMed, Scopus, ProQuest, and Science Direct databases was conducted in September 2018. We also reviewed the existing thalassemia registry websites in different countries. The keywords used to our search were as follows: Thalassemia, Hemoglobinopathy, Registry, Database, and Registration System. Some features such as the name of registry, funding source, objectives of the registry, minimum data set, and methods of data collection were determined.
Results:
We identified 16 thalassemia registries operating on a multinational, national, or regional level between1984 and 2016. Most of these aimed to improve the diagnosis and management of control programs. Government funding was the most common funding source for registries. Furthermore, the most common method of data submission was Web-based data entry. The data were entered by a member of the clinical team or a nominated data manager.
Conclusion:
Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, thalassemia patients and their caregivers. However, the results of research suggest the establishment of an international network for coordination and collaboration between thalassemia registries.
A hospital information system is used to support a wide range of operations and activities in the hospital. This study was conducted to determine the factors affecting hospital information system acceptance by users.
A cross-sectional, descriptive, analytic study was performed in 2018. The study population included 550 users of the system. The data were collected using a questionnaire and analyzed using the SPSS software.
A significant moderate positive correlation was found between hospital information system acceptance and perceived usefulness (r = 0.54, P < 0.01), perceived ease of use (r = 0.41, P < 0.01), human factors (r = 0.46, P < 0.01) and technological factors (r = 0.54, P < 0.01). A significant weak positive correlation was detected between the acceptance of the hospital information system and organizational factors (r = 0.35, P < 0.01).
Perceived usefulness of the system, social influence, system quality, perceived ease of use of the system, and top managers’ supports had the most substantial influence on the users’ intention to accept a hospital information system. User education, preparation of guidelines suited to the user specialty or department, incorporating users’ work needs into the capabilities of the hospital information system, and improving the system to an ideal level are important considerations.
Due to the information systems objectives, and to avoid duplication and to help improve care quality and reduce cost, it is necessary to conduct continuous evaluation to determine how to achieve these goals. This study was performed using evaluation indices of hospital Information systems (HIS)
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