Irish Motor Neurone Disease Register
The Irish MND register includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information from over 2,300 patients. On average 110 new cases per annum, with 300 people affected at any one time. A DNA bank was added in 1998. This bank contains samples from over 1250 patients.
**Purpose:** The purpose of the Register is to track the incidence, prevalence and clinical features of MND in the Irish population. The Register aims to gather a relatively narrow capture of key variables on all MND patients which help us describe the population. More detailed information is gathered through cohort studies to which people identified through the Register are consented separately.
**Coverage:** All known patients diagnosed with MND each year in the Republic of Ireland.
Temporally data is collected from a person with MND as soon as they consent to be included which is generally shortly after they are diagnosed. Data collection is actively continued, mainly through the health record until t
Health Category
Language
Access Rights
- Organization
- National MND Clinic
- License
- Creative Commons Attribution Share-Alike
Metadata
| Field | Value |
|---|---|
| Access Rights | http://publications.europa.eu/resource/authority/access-right/PUBLIC |
| Frequency | http://publications.europa.eu/resource/authority/frequency/MONTHLY |
| Id | 21c4bbab-2b99-44df-a8a8-78c6be9991f9 |
| Identifier | NDC-0067 |
| Isopen | True |
| Issued | 1994-01-01 |
| License Id | cc-by-sa |
| License Title | Creative Commons Attribution Share-Alike |
| License Url | http://www.opendefinition.org/licenses/cc-by-sa |
| Max Typical Age | 65 |
| Metadata Created | 2026-03-19T17:17:09.768219 |
| Metadata Modified | 2026-03-19T17:17:09.768222 |
| Min Typical Age | 18 |
| Modified | 2023-04-16 |
| Name | irish-motor-neurone-disease-register-67 |
| Notes | The Irish MND register includes all known patients diagnosed with MND each year. It dates back to 1994 and it now has clinical information from over 2,300 patients. On average 110 new cases per annum, with 300 people affected at any one time. A DNA bank was added in 1998. This bank contains samples from over 1250 patients. **Purpose:** The purpose of the Register is to track the incidence, prevalence and clinical features of MND in the Irish population. The Register aims to gather a relatively narrow capture of key variables on all MND patients which help us describe the population. More detailed information is gathered through cohort studies to which people identified through the Register are consented separately. **Coverage:** All known patients diagnosed with MND each year in the Republic of Ireland. Temporally data is collected from a person with MND as soon as they consent to be included which is generally shortly after they are diagnosed. Data collection is actively continued, mainly through the health record until t |
| Num Resources | 0 |
| Num Tags | 3 |
| Number Of Records | 13279 |
| Number Of Unique Individuals | 225429 |
| Private | False |
| Provenance | HIPE departments in all major hospitals are searched using ICD-9 to ascertain and confirm all MND diagnosis. The Central Statistics Office (CSO) Deaths Register is searched using ICD-9 primarily to capture MND cases where the subject passed away shortly after diagnosis. The register is based on direct nationwide chart review/ confirmation by the diagnosing physician. |
| Title | Irish Motor Neurone Disease Register |
| Type | dataset |
No history available for this dataset.