A standard core clinical dataset has been defined with input from ALS researchers internationally. A minimal dataset that should be obtained for all ALS patients (and controls) that participate in ALS research projects.
A template to collect this data has been created in an international ALS database, using Progeny database software. This database is coordinated by the ALS Center Netherlands at the University Medical Center Utrecht (UMCU) who provide access, support and helpdesk service free of charge.
EuroMOTOR
EuroMOTOR is the European multidisciplinary ALS network identification to cure motor neurone degeneration. The project is EU FP7 funded. The objective of EuroMOTOR is to discover new causative and disease-modifying pathways to pave the way of novel therapies for ALS. This will be achieved by pursuing the following 3 sub-objectives in different pillars.
These 3 pillars form the basis of the EuroMOTOR project, and the framework of this proposal.
- Pillar I To generate large scale quantitative data sets.
- Pillar II To intergrate these data in a robust computational ALS model.
- Pillar III To validate this computational model and apply it for the development of novel therapies.
EuroMOTOR Standard Operating Procedures (for sharing)
- Patients/Controls Recruitment and Questionnaires Administration: EuroMOTOR SOP questionnaires
- Environmental and risk factors questionnaire for patients/controls: EuroMOTOR_SOP CRF 1.00 subject
- Clinical data questionnaire and neuropsychology testing for examiners: EuroMOTOR CRF 1.00 examiner
- SOP DNA purification SOP DNA purification_Chemagic_DNA_Blood5k_Kit
Visit the EuroMOTOR project website
SOPHIA
SOPHIA stands for Sampling and biomarker OPtimization and Harmonization In ALS and other motor neuron diseases. SOPHIA is a consortium of 17 ALS centres in Europe, and recognises the urgent need to develop biomarkers to expedite diagnosis, characterize disease burden and to predict disease course for neurodegenerative diseases, and specifically for amyotrophic lateral sclerosis (ALS).
SOPHIA Standard Operating Procedures (for sharing)
- 2013-12 SOP Brain dissection_SOPHIA
- 2013-12-18 SOP Blood & urine sample collection_SOPHIA
- ECAS Guidelines – administration and translation
- ECAS SOP – Sophia
STRENGTH
Strength consortium partners have DNA, exposure information and clinical data from people with ALS enrolled in pan-european population registers covering about 120 million people. This is the largest such resource for studying worldwide. Strength takes advantage of existing projects, such as EuroMOTOR, designed to help collect large amounts information and SOPHIA which makes sure all data is collected in the same way. By large, this is a well set multilayered data project that will find factors that influence ALS and identify targets to design new therapies.
More information on the STRENGTH project
Needs in ALS
The overall aim of NEEDS in ALS is to determine factors of decisions to prolong or shorten life in patients with a severe life threatening disease in different European countries. Amyotrophic lateral sclerosis (ALS) will serve as a model disease in which body functions are lost in a short period of time. Loss of movements and speech are most prominent and death usually occurs within 3 – 5 years. The reasons for decisions to prolong (with for example, mechanical ventilation) or shorten life (with for example, euthanasia) are mostly unknown.
Visit the NEEDS in ALS project website
ALS-CarE
The purpose of ALS-CarE is to use existing information drawn from partner countries into a system of care that is available to people with ALS at the correct time, in the correct format and in a cost effective manner. This will be achieved by collecting details of patient and carer experiences across all stages of from diagnosis to end of life, including decision making in the terminal stages of the disease. A health economic analysis will help to identify the overall costs of disease management, provide models of increased efficiency that preserve and maximise quality of life, and begin to develop novel health economic measurement tools for terminal neurological illness.
More information about the ALS-CarE project
Project MinE
Project MinE is an international groundbreaking genetic ALS research project. To understand the genetic basis of ALS and to ultimately find a cure for this devastating, fatal neuromuscular disease, Project MinE aims to analyse the DNA of at least 15,000 ALS patients and 7,500 control subjects with whole genome sequencing. The resulting 22,500 DNA profiles will be compared. Many countries worldwide are participating in Project MinE.
Visit the Project MinE website
Project MinE Standard Operating Procedures
ONWebDUALS
ONWebDUALS stands for ONtology-based Web Database for Understanding Amyotrophic Lateral Sclerosis. This project, funded by JPND – EU Joint Programme Neurodegenerative Disease, started in March 2015 in Portugal, Poland, Germany and Sweden. ONWebDUALS aims to investigate the interplay between phenotype-genotype information and identify relevant risk and prognostic factors in ALS. For that purpose a standardized European database is being built, including detailed phenotypic information and results from the most common genetic mutations in ALS. These data will be analyzed through ONTOLOGY data-mining and the retrieved information will allow advising specific preventive strategies for homogenous populations.