The Minimum Data Set for Rare Diseases: Systematic Review.

ABSTRACT:

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. Health data are typically voluminous, complex, and sometimes too ambiguous to generate indicators that can provide knowledge and information on health. This complexity extends further to the rare disease (RD) domain. MDSs are essential for health surveillance as they help provide services and generate recommended population indicators. There is a bottleneck in international literature that reveals a global problem with data collection, recording, and structuring in RD.

Objective

This study aimed to identify and analyze the MDSs used for RD in health care networks worldwide and compare them with World Healt

SUBMITTER: Bernardi FA 

PROVIDER: S-EPMC10415943 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature