National Intellectual Disability Database (NIDD)

Data Collection Type
National data collections of health and social care in Ireland
Organisation

Health Research Board, Department of Health

Year established

1995

Statement of purpose

The National Intellectual Disability Database (NIDD) is a service planning tool designed to capture data on the usage of and the need for specialist disability services among people with intellectual disability.

Coverage

National

Description

NIDD outlines the specialised health services currently used or needed by people with intellectual disability. The database informs the regional and national planning of these services by providing information on trends in demographics, current service use and future service need.

Data content

Includes details on current service provision (type of service; agency providing service; frequency) and future service requirements (type of services; year when required; frequency). 
Personal details include: date of birth; gender; area of residence and level of intellectual disability. 
Administrative details include: date; HSE area with responsibility for returning data and agency responsible for returning data.

Data providers

Intellectual disability service providers (HSE and non-statutory bodies), school principals.

Data collection methodology

The system is web-based. The HSE areas within the Republic of Ireland administer the NIDD. Responsibility for providing the information to the HSE lies primarily with service providers, HSE personnel and school principals, who complete a hardcopy or online database form for each individual.

Data dictionary

Under revision as part of HRB LINK project.

Clinical coding scheme

For the purposes of NIDD, intellectual disability is defined using the criteria set out in the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, (ICD-10), which categorises degrees of disability on a scale ranging from mild to moderate to severe to profound.

Size of national collection

Approximately 28,000 records created annually.

Publication frequency

The HRB extracts information annually (excluding personal information such as name and address) from NIDD. An annual report is published and Community Healthcare Organisations (CHO) bulletins are circulated to the HSE. In addition, trend data from NIDD are published periodically.

Accessing data

Data requests.
Reports/publications.
Reports module and query tool available to HSE and service providers. Access is based on role and level of responsibility.

Open data portal access

Yes

Email contact
Telephone contact
Other comments

Will be merged with the HRB’s National Physical and Sensory Disability Database (NPSDD) as part of the HRB LINK project. Roll out to commence in 2017.