The Irish ALS/MND Register
To enable effective research in ALS/MND, we require detailed information about the incidence, prevalence and clinical features in the Irish population. The Irish ALS/MND Register is the epidemiological tool which provides the platform to collect and store this vital data. Founded in 1995, the Register now has information on over 2,400 patients. The aim is to include everyone diagnosed with ALS/MND each year in the Republic of Ireland. This data informs all other research projects carried out by the group meaning the Register is the cornerstone of the Irish ALS/MND research group.
The Register is now the longest running of its kind in the world, and we are frequently asked for advice by people from other countries who are interested in developing a similar research resource.
Some of the important features of the Irish register include:
- Multiple sources of information facilitates capture of all cases in the Republic of Ireland
- Capture of all cases allows us to produce annual incidence and prevalence statistics and therefore spot changes in the demographics of the disease
- Using data from the Central Statistics Office and Ordnance Survey Ireland we can map ALS incidence by small area and therefore detect areas of high or low incidence
- Complete follow-up of cases via multiple sources facilitates sophisticated survival analysis
Our Register is closely linked with other Registers in Scotland, Holland, Germany and Italy, through our European Research Consortium (European Network for the Cure of ALS – ENCALS). Together we can map the disease across Europe and search for genetic and environmental causes.
Euro-MOTOR & LAENALS
The objective of the Euro-MOTOR project was to discover new causative and disease-modifying pathways to pave the way for novel therapies in Amyotrophic Lateral Sclerosis (ALS). The purpose of the EUROMOTOR project is to generate an individualised multi-level “-omics” dataset consisting of genome, transcriptome, proteome, metabolome, phenome and exposome data. Details relating to place of birth, previous residence, occupations, physical exercise, medical history and drug use, trauma, and other exposures (including chemicals, radiation, alcohol and tobacco) were systematically collected from 1557 ALS patients recruited from the ALS registers of Ireland, Italy and The Netherlands, and 2922 healthy controls recruited from the source populations in each country. Analysis of the Euro-MOTOR data is ongoing.
Recently, the Euro-MOTOR survey has been adapted for use in three South-American countries (Cuba, Ecuador and Uruguay) as part of the LAENALS consortium (Latin American Epidemiological Network for ALS). Recruitment of patients for the LAENALS is ongoing in South-America and Europe, and eventually this data will be combined with the original Euro-MOTOR data to facilitate more powerful statistical analysis of risk factors for ALS.
Gene Pleiotropy and Neuropsychiatric Endophenotypes Study
In collaboration with the University of Edinburgh (Prof. Sharon Abrahams), we aim to define the frequency and nature of neuropsychiatric and neurobehavioral conditions in ALS patients, controls and their first and second-degree relatives using neuropsychiatric, neuropsychological and behavourial profiling batteries and interviews in conjunction with genetic testing and neuroimaging. By comparing the results for relatives of ALS patients with those of controls, we aim to identify ALS families with higher than expected levels of neuropsychiatric and neurobehavioral conditions. By performing genetic analyses on informative families, we hope to identify new susceptibility genes and biological pathways in ALS and neuropsychiatric disorders. This will enhance research design in future ALS studies and ultimately improve clinical care. Advancing our knowledge of the biological pathways in ALS, we hope will allow for the discovery of potential novel therapeutic targets.