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 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 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
Needs in ALS
Project MinE Standard Operating Procedures
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.