[HTML][HTML] The minimum data set for rare diseases: systematic review

FA Bernardi, B Mello de Oliveira… - Journal of Medical …, 2023 - jmir.org
Background The minimum data set (MDS) is a collection of data elements to be grouped
using a standard approach to allow the use of data for clinical and research purposes …

Incidence, prevalence, and national burden of interstitial lung diseases in India: estimates from two studies of 3089 subjects

S Dhooria, IS Sehgal, R Agarwal, V Muthu, KT Prasad… - PLoS …, 2022 - journals.plos.org
Background and objective The epidemiology of interstitial lung diseases (ILDs) in
developing countries remains unknown. The objective of this study was to estimate the …

[HTML][HTML] The utilisation of primary health care system concepts positively impacts the assistance of patients with rare diseases despite limited knowledge and …

RL Ferreira, IJB do Nascimento… - Journal of Global …, 2023 - ncbi.nlm.nih.gov
Background Individuals with rare diseases (RD) have been historically understudied.
Previous publications reported that existing primary health care (PHC) workforces and …

Design and Development of a Hospital‐Based Coronary Artery Disease (CAD) Registry in Iran

A Garavand, R Rabiei, H Emami - BioMed Research …, 2023 - Wiley Online Library
Background. The incidence of coronary artery disease (CAD), the leading cause of mortality
in most developed and developing countries, is increasing. The adoption of hospital …

Scoping review of the recommendations and guidance for improving the quality of rare disease registries

JE Tarride, A Okoh, K Aryal, C Prada… - Orphanet Journal of …, 2024 - Springer
Abstract Background Rare disease registries (RDRs) are valuable tools for improving
clinical care and advancing research. However, they often vary qualitatively, structurally, and …

Advances in bone-targeting drug delivery: Emerging strategies using adeno-associated virus

T Sato, S Chaugule, MB Greenblatt, G Gao… - Human Gene …, 2024 - liebertpub.com
The development of bone-targeting drug delivery systems holds immense promise for
improving the treatment of skeletal diseases. By precisely delivering therapeutic agents to …

Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review

P Tsitsani, G Katsaras, ES Soteriades - Pediatric Reports, 2023 - mdpi.com
Rare Diseases (RDs) in adolescents are characterized by low frequency and clinical
heterogeneity, are chronic and deliberating and demand a multidisciplinary approach as …

[PDF][PDF] Designing the coronary artery disease registry with data management processes approach: a comparative systematic review in selected registries

A Garavand, H Emami, R Rabiei… - International …, 2020 - brieflands.com
: Context The use of registries to Coronary Artery Disease (CAD) data management plays an
important role in the improvement of healthcare processes and reduction of outcomes for …

[HTML][HTML] Cerebral palsy information system with an approach to information architecture: A systematic review

M Afzali, K Etemad, A Kazemi… - BMJ Health & Care …, 2019 - ncbi.nlm.nih.gov
Cerebral palsy information system with an approach to information architecture: a systematic
review - PMC Back to Top Skip to main content NIH NLM Logo Access keys NCBI Homepage …

Factors affecting the acceptance of mobile health by medical sciences students: A cross-sectional study

M Samadbeik, A Garavand, M Kordi… - Iranian Journal of …, 2020 - journals.lww.com
Background: The use of mobile health has a pivotal role in the prevention and treatment of
many diseases. This study aimed at determining the affecting factors in acceptance of …