Malta Rare Disease Register

Overview
Type of information
Registry data
URL of the data source
https://deputyprimeminister.gov.mt/en/dhir/Pages/Registries/Rare-diseases.aspx
Description

The register is population-based and aims at covering most diagnoses falling under the definition of rare diseases. It harvests data collected from a number of other sources (including the Congenital Anomalies Register, the Cancer Registry and Treatment Abroad).  Data on rare diseases is coded using the Orphanet Classification of Rare Diseases​. 

Governance and legal framework

The Malta Rare Disease Register collects and processes personal information for statistical and research purposes and in the interests of public health. All data is collected and processed in accordance to the Data Protection Act (Malta, 2018) and the stemming legislation Subsidiary Legislation 528.10 Processing Of Personal Data (Secondary Processing) (Health Sector) Regulations, 2019

Funding

The Registry is part of the Directorate for Health Information and Research and is wholly funded by the Government of Malta.

Free keywords
Rare diseases
Topics
Health status » Morbidity/disability » Disability;
Health status » Morbidity/disability » Non-communicable diseases » Cancer;
Health status » Morbidity/disability » Non-communicable diseases » Cardiovascular diseases;
Health status » Morbidity/disability » Non-communicable diseases » Reproductive, maternal and newborn health;
Health status » Morbidity/disability » Non-communicable diseases » Respiratory diseases
Country(ies):
GEO coverage
Nuts 1
Target Population
Patients
Age range
From 0 years
Sex
Both
Data Collection Period
From 01 January 2016 - Ongoing
Language(s)
English
Updating Periodicity
Daily
Personal Identifier
National identifier
Level of aggregation
Individual
Terms of data access - URL
For aggregate data: https://deputyprimeminister.gov.mt/en/dhir/Pages/request-for-data-form.aspx For record level data: https://deputyprimeminister.gov.mt/en/dhir/Pages/Contact-us.aspx
Terms of data access

For aggregate data: https://deputyprimeminister.gov.mt/en/dhir/Pages/request-for-data-form.aspx    

For record level data: https://deputyprimeminister.gov.mt/en/dhir/Pages/Contact-us.aspx  

Requests are then handled by internally following strict adherence to ethical and data confidentiality requirements prior to release of data.

Regulations for data sharing

All data is collected and processed in accordance to the Data Protection Act (Malta, 2018) and the stemming legislation Subsidiary Legislation 528.10 Processing Of Personal Data (Secondary Processing) (Health Sector) Regulations, 2019.

Linkage possible
Yes
Data Owner(s)
Directorate for Health Information and Research
Contact name
Dr Miriam Azzopardi​
Contact e-mail
healthinfo@gov.mt
Contact info (address)

DHIR, 95, Telghet Gwardamanga, PIETA', Malta

Updated on 10 August 2022