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ALS Hope Foundation Research Collaborations
The ALS Hope Foundation has encouraged collaborations across Universities by providing supplemental support of multicenter clinical trials and providing
support for consortium meetings for research planning among investigators. To date, the ALS Hope Foundation has funded the following collaborative efforts:
2005-6: In addition to supporting the NEALS Consortium Investigator meeting which has grown to 35 centers, the ALS Hope Foundation has initiated the Pennsylvania
Consortium of ALS Centers. This program will encourage collaboration between the Center of Hope at Drexel University, the ALS Center at Hershey, and the ALS
Center at Pittsburgh University. The first step in this is to develop a standard set of data to be collected on all patients across the three centers. Next,
there will be a shared data base of information regarding patient populations at each center and available research materials. The long term goal is to develop
collaborative research projects that will be done across all three centers to accelerate the collection of information. In addition, the ALS Hope Foundation has
provided funding for the first meeting of a Mouse Genetics Consortium that will join together investigators across the country to collaborate on finding the
genes in ALS mice that modify the severity of ALS in the mice.
2004-5: The ALS Hope Foundation funds the NEALS Consortium Investigator Meeting in Oct of 2005. There are now almost 30 centers involved. Several investigator
initiated trials including Talampanel, Keppra, as well as studies to determine the metabolic profile of ALS patients, and studies to examine exercise effects
are discussed. The ALS Hope Foundation has provided supplemental funds to buy respiratory equipment for those centers involved in the NIH funded grant examining
nutrition and NIPPV.
2003-4: The ALS Hope Foundation supports the NEALS Consortium Investigator Meeting leading to the development of additional ideas for clinical trials and a
sharing of research among the more than 20 centers that participate.
2002-3: The ALS Hope Foundation provided support for the NEALS Consortium to meet for the purpose of developing additional collaborations and new clinical
trials. Future trials of the drug Ceftriaxone were planned and the initial discussions were carried out at these meetings. These discussions led to the
submission of a grant to the NIH which was recently funded to perform a clinical trial of Ceftriaxone in ALS. The initial patients are now being enrolled.
2002: The ALS Hope Foundation provided support for the Investigators meeting for Centers participating in the recent trial of Celebrex in ALS.
Results should be released shortly on this trial.
2001: The ALS Hope Foundation helped to fund the monitor for the trial of creatine in ALS that was spearheaded by Dr. Jeremy Sheffner and included
multiple centers from the Northeast ALS Consortium (NEALS). This study showed negative results and will be published shortly in Neurology.
2000: Collaborative Meeting of investigators from the University of Kentucky, Drexel University, Columbia University, University of Wisconsin, and others to develop a plan to
study the use of NIPPV and early nutritional intervention on survival and quality of life in ALS. The goal of this work is to determine the best management of respiratory and
nutritional concerns in ALS and to evaluate if the use of optimum nutrition and NIPPV is additive. This meeting led to the submission of an NIH grant that received a score
placing it in the upper 2.5 percentile of submitted grants. It is now ongoing with the collaboration of 10 University Centers across the country
Collaborations at Drexel University
• Work of Breathing in ALS, Prospective trial of NIPPV, Compliance of NIPPV, Nutritional needs in ALS-Pulmonary Department
• Novel Molecule Development- Cell Biology and Anatomy
• Stem cell development-Anatomy and Cell Biology
• Genetic influence on clinical severity- Microbiology and Immunology
Collaborations between Drexel University and other Universities
• Brain Computer Interface Program- Wadsworth VA
• QOL in ALS-Hershey Medical School
• Symptom Management-Utah, Minnesota, Wake Forest
Collaborations between Drexel University and Industry
• Celgene
Encouraging others to collaborate
• NEALS Investigator Meeting
• Pennsylvania Consortium of ALS Centers
• Mouse Genetics Consortium
• International Alliance
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