Author/Authors :
Ahmadi Maryam نويسنده , Sarsarshahi Aida نويسنده Health Information Management Department, School of
Management and Medical Information Sciences, International Campus
(IUMS-IC), Iran University of Medical Sciences, Tehran, IR
Iran , Niazkhani Zahra نويسنده Health Information Technology Department, Urmia University
of Medical Sciences, Urmia, IR Iran
Abstract :
Context Population aging is one of the most important health
concerns worldwide, leading to an increase in the prevalence of chronic
diseases such as dementia and Alzheimer disease (AD). Disease registries
have great potential to determine the effect of clinical care,
healthcare costs, and healthcare improvement for patients. Although
there are several registries for dementia and AD worldwide, no
systematic review is so far performed in this area. Therefore, the
current study aimed at identifying the basic information in dementia and
AD registries and comparing their characteristics. Evidence Acquisition
The current systematic review studied the dementia and AD registries in
English literature based on keywords in the title with no time
limitations, using the following databases: Institute of Electrical and
Electronics Engineers (IEEE), ProQuest, PubMed, Science Direct, Web of
Science, Scopus, Ovid Medline, Scientific Information Database (SID),
and IranMedex (earliest entry to 07 February, 2017). In the current
research, only the studies related to disease registries were evaluated.
Results A total of 28 articles meeting the inclusion criteria were
evaluated in the current study. Based on the findings, 22 dementia and
AD registries were identified. The majority of the registries (13
registries) were from North America. In half of the registries, patient
recruitment was performed among outpatients and inpatients referred to
healthcare centers. The comparison of the structural information in
these registry systems showed that they differed in terms of objectives,
data sources, minimum data sets, and data quality. Conclusions The
current study was the 1st systematic review of dementia and AD
registries. Since there are no international standards to develop
dementia and AD registries, comprehensive analysis can be effective to
promote disease registry systems.
