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Patient Registries

Patient Registries

Not only clinical trials in ALS but also some basic and translational scientific research such as genetic screening studies rely on the availability of suitable patient cohorts. From a research perspective, epidemiological registries play a vital role in clarifying the clinical phenomenology, report treatment efficiency, identify patterns and factors effecting disease course and prognosis. In addition to counting and locating patients and providing important support for improved patient care, research oriented ALS patient registries would ideally enable capturing and use of different kind of information across a number of health centers within a single data base. Such information source could then be accessible to both research community and pharmaceutical companies conducting clinical trials (in compliance with regulation policies). Typically registries are set-up as local (regional or national) initiatives, and combination of these efforts can lead to development of a global patient registry. Such resource does not still exist for ALS but some collaborative projects and important breakthroughs are reported recently.

The first US National ALS Registry has been lunched and funded in October 2010 by Federal Government with an active participation of ALS Association in a campaign that led to its establishment. The program collects, manages, and analyzes data about people with ALS and is implemented at the Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (CDC/ATSDR). It includes data from existing national databases and information provided by patients who choose to participate. Information contained will be accessible to researchers and will also provide updated links for patient resources like ALS clinical trials. Selected states and cities will also gather data about ALS in their areas. Data from these smaller-scale registries will be used to evaluate the completeness and accuracy of the data in the National ALS Registry.

The ongoing European Consortium of ALS Registries (EURALS) was established in 2004 to cordinate the scientific activities of ALS population-based registries and tertiary centers, and to conduct epidemiological, genetic studies and rendomized clinical trials of novel compounds and devices. The project allows for an efficient, standardized and harmonized population-based collection of patient samples and life-style questionnaires. Well defined and harmonized guidelines on sampling have been implemented across the different national and regional registries in participating countries (Ireland, Italy, France, Serbia, Spain, Netherlands and United Kingdom). The database is located at Mario Negri Institute in Milan and data are available to he principal investigators of each participating country. European patient registry remains one of the main objectives within Health FP7 Euro-MOTOR project.

References: Beghi et al, 2009 , Logroscino et al, 2010  

In Italy several prospective epidemiological regional registries are active that contribute to EURALS database:

Piemonte and Valle d'Aosta Registry for ALS (PRALS) coordinated by 2nd Division of Neurology Department of Neuroscience, University of Torino;  Chio et al, 2009  

Prospective ALS registry in Lombardia (SLALOM group) coordinated by Neurological Clinic, University of Biccoca, Monza Beghi et al, 2007  

Tuscany Registy for ALS (TRALS) coordinated by Neurorehabilitation Unit, Department of Neuroscience, Azienda Ospedaliero-Universitaria Pisana (AOUP)

Sclerosi Laterale Amiotrofica- Puglia (SLAP Registry) established in Southern Italy and coordinated by Department of Neurological Sciences, University of Bari Zoccolella et al, 2007  

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