Rare diseases in ICD11: making rare diseases visible in health information systems through appropriate coding

Rare diseases in ICD11: making rare diseases visible in health information systems through appropriate coding

BACKGROUND Because of their individual rarity, genetic diseases and other types of rare diseases are under-represented in healthcare coding systems; this contributes to a lack of ascertainment and recognition of their importance for healthcare planning and resource allocation, and prevents clinical research from being performed. METHODS Orphanet was given the task to develop an inventory of r...

Coding of rare diseases in health information systems with Orphacodes

Rare Visible disorders/Diseases as Individually Identifiable Health Information

Individually identifiable health information needs to be masked or deleted in the secondary use of data for research. We defined and identified rare visible disorders as part of de-identification of individually identifiable health information. The prevalence of these disorders was evaluated using an administrative database and conformed to our definition. Due emphasis should be given to rare v...

Sustainable public health systems for rare diseases.

INTRODUCTION In the framework of the Joint Action for Rare Diseases (RD-ACTION), a specific task was defined to identify mechanisms influencing sustainability, equity and resilience of health systems for rare diseases (RDs). METHOD Literature narrative review on health systems sustainability and resilience for RDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL, EMBASE,...

Impact of rare diseases in oral health

BACKGROUND Rare diseases (RD) are those that present a lower prevalence than 5 cases per 10.000 population. The main objective of this review was to study the effect on oral health in rare diseases, while the secondary objective of the study is theme upgrade. MATERIAL AND METHODS Comparative observational case-control studies were analysed and a systematic review was conducted in PubMed. Each...