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Research Networks

Research Networks

Collaborative efforts are of pivotal importance in ALS research - this complex and multifaceted disease comprises a plethora of pathogenetic mechanisms that have so far been studied and implicated in its onset and progression and a multitude of still unanswered conundrums.  Research networking provides a valuable platform for data exchange and interpretation and for launching new and multidisciplinary studies, while providing an access to resources and their optimization, and allowing testing new ideas and avenues. In this way collaborative research initiatives are facilitated that cannot be achieved by a single centre. This is especially true for fostering interactions between basic and clinical scientists and creating the appealing basis for partnership with relevant pharmaceutical industries.

In US and Canada ALS clinical research networks are having unprecedented impact on facilitating and improving and running clinical trials.

The The MDA ALS Clinical Research Network Established by MDA in October, 2008 is a nationwide consortium of MDA/ALS Centers  (California Pacific Medical Center in San Francisco, at Massachusetts General Hospital in Boston, Columbia University in New York City, Emory University in Atlanta and Methodist Hospital in Houston) receiving  MDA grants ($100,000 per center, per year) to fund the infrastructure necessary for better communication and greater collaboration among their centers; to lay the groundwork for multicenter studies; and to connect with other ALS clinical research networks. The first clinical research study  run through the network is a high-fat diet study led by Merit Cudkowicz and Anne-Marie Wills at Massachusetts General Hospital.

The Canadian ALS Research Network (CALS) is a national consortium of leading ALS clinicians and researchers involving 15 ALS clinics and supported by the ALS Society of Canada. This alliance is committed to the expansion of ALS clinical research studies in Canada and to the pursuit of effective therapies for patients with ALS. This includes both investigator and industry initiated multicentre national and international studies testing promising therapeutics. CALS has a cooperative relationship with the Northeast ALS Consortium (NEALS) in US

The Northeast ALA Consortium (NEALS) is an independent, non-profit consortium of clinical and scientific investigators who collaboratively conduct ALS clinical research at their affiliated institutions. NEALS was founded in 1995 and  today includes 94 academic and clinical centers across the US, Canada, Ireland, and Puerto Rico. NEALS is supported by ALS Association's TREAT ALS Network and works with other professional organizations and government and industry sponsors to develop substantive treatments for patients with ALS.

Several European initiatives and bodies are currently promoting more effective collaboration of ALS researchers and practitioners across Europe.

The European ALS consortium  (EALSC)  is a democratic organisation that has so far encouraged a number of collaborative projects throughout Europe. These have included surveys of the provision of care, workshops on clinical trials and clinical management sponsored by the European Neuromuscular Centre. The consortium  has  released guidelines for preclinical animal studies, studies in nutrition, and databases and has a strategic focus on planning and running investigator-led clinical trials.  EALSC closely collaborated with European Federation of neurological societies (EFNS) by reconstituting, in 2009, the EFNS Scientist Panel on ALS (and non-dementing degenerative disorders). Currently the EALSC is co -chaired by Professor Albert Ludolph and Professor Leonard van den Berg. Consortium constantly  broadens its base by the inclusion of representatives from all countries affiliated to the EFNS while at the same time retaining and strengthening its existing and effective partnerships. The EALSC holds an annual meeting in parallel with the International Symposium on ALS/MND In 2011, the yearly meeting will take place in Hannover, Germany and will be organized by Prof. Reinhard Dengler.  Among immediate objectives of EALSC regard the improvement of information sharing on ongoing research activities and development of infrastructure that enables conduction of non-pharmaceutical industry led trials at national and international level. Special attention is placed on the definition of available biomarkers and protocols for diagnostics and therapeutic monitoring in ALS.

Two large Health projects on ALS are currently ongoing sponsored by FP7 European Commission:

MitoTarget consortium is an EU funded consortium 7th Framework Health Program dedicated to finding therapies for ALS. In particular the project is focused on mitochondrial dysfunction and novel class of putative therapeutic agents targeting mitochondria and claimed to have neuroprotective and neuroregenerative properties. The consortium is led by Trophos, and contains 14 partners from UK, Germany and France .

Euro-MOTOR is aimed at discovery of new causative and disease modifying pathways as to pave the way for novel therapies for ALS.  The central concept is generation of a robust and validated computational ALS model by integrating large scale quantitative data sets through employment of EURALS Registries, state-of-art in vitro and in vivo models, generation and validation of -omics data. Both clinical validation and functional genomic approaches are envisaged. The consortium is coordinated by UMC Utrecht and comprises 12 partners from Ireland, UK, Netherlands, Germany, Belgium, France and Italy.

In Italy two consortia are constituted and are currently active with the objective to study ALS genetics and collect a large number of well phenotyped samples:

ITALSGEN established in 2007, involving 15 partecipating centers and coordinated by the ALS Centre of the Department  of Neuroscience of University of Turin. The consortium has collected and genetically screened blood samples from over 700 ALS patients. References: Chiò et al, 2009, Lai et al, 2010 

SLAGEN is coordinated by Dino Ferrari Centre, Laboratory of Neuroscience at Auxological Institute in Milan. Consortium  has so far collected and analyzed  camples from over 2000 ALS patients comprising well characterized FALS cohort (over 150 samples from 120 Italian pedigrees) References: Corrado et al, 2010 


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