Information Registry System on Congenital Hypothyroidism: A Systematic Review

Context:

Congenital hypothyroidism is the most common congenital disorder of the endocrine system, which can lead to preventable mental retardation.

We aimed to evaluate the current status of congenital hypothyroidism information registry systems.

Data Sources:

In this systematic review, the databases Scopus, science direct ProQuest, PubMed, as well as the search engine Google scholar (no restriction on date of publication) up to 2020, were searched. Inclusion criteria were the Articles with the English language that examining information registry systems on congenital hypothyroidism. Articles whose full texts were not accessible, case reports, and letters to the editor had to be excluded. In order to selection of relevant studies, the retrieved articles were accordingly screened based on the inclusion and exclusion criteria.

Study Selection:

in this systematic review 290 papers identified. A total of 254 articles were screened, of which 17 qualified articles were selected.

Data Extraction:

Two authors used the data extraction form to independently extract relevant data from included studies. Disagreements between authors were reconciled through discussion and consensus.

The results of this study showed that the main goal of nearly half (50%) of the information registry systems for congenital hypothyroidism is to evaluate the efficiency and effectiveness of the screening program. Other information registry systems for congenital hypothyroidism work with the aim of examining the epidemiology of disease in 4 studies (23.6%), monitoring iodine deficiency 3 studies (18%), surveillance disease 1 study (6%) and describing the clinical and familial features of the patient 1 study (6%).

Few studies have been done on the development of an information registry systems, and most studies have focused on the use of information systems in this field. Further Comprehensive reviews are recommended to investigate the infrastructure to commission national registry and world network to record information units on congenital hypothyroidism.