ALS Ice Bucket Challenge Progress
April 12, 2006
[QUICK SUMMARY : A consortium effort is under way to steer research toward possible environmental, lifestyle and genetic risk factors in ALS.]
The ALS Association (ALSA) is pleased to report considerable progress in implementing a consortium and associated web site to guide and streamline investigations into possible risk factors that contribute to the risk of developing amyotrophic lateral sclerosis (ALS, also called Lou Gehrig’s disease). The unique effort has been funded by ALSA and is led by Stanford University epidemiologist Lorene Nelson, Ph.D.
The ALS Consortium of Epidemiologic Studies (ACES) is intended as a resource for scientists who are conducting or plan to conduct research to identify risk factors associated with sporadic ALS. During the past year of formalizing the consortium, and with the launch of the ACES web site this March, Nelson and her colleagues have laid the groundwork and have made considerable progress in establishing a network of investigators and a common framework to streamline the difficult effort to identify what factors in a person’s genetic makeup, experience and exposure to the environment may combine to influence the risk of developing ALS.
“These studies are notoriously difficult to design and implement,” said Lucie Bruijn, Ph.D., ALSA science director and vice president. “This unique consortium effort promises to help identify risk factors for ALS.”
Nelson and colleagues have implemented a web resource to facilitate communication between investigators and to provide an infrastructure for interdisciplinary collaborations. They are also developing standardized questionnaires and methods of data collection to investigate what environmental and lifestyle risk factors might contribute to ALS.
A specific aim of the project is to form a communication network so that scientists can collaborate and share methodologies to advance knowledge of the environmental and genetic risk factors for ALS. More than 50 ALS researchers have expressed an interest in being part of ACES. An initial meeting with many of these researchers took place in Miami on April 13, 2005 at the annual meeting of the American Academy of Neurology (AAN), where Nelson presented the overall objectives of ACES and solicited feedback. This meeting included scientists worldwide, including many of the researchers who are participating in the European ALS epidemiology group.
It was decided that ACES would lead the effort to standardize the design and collection of risk factor data, while the initial effort of the European ALS group would be to develop a new ALS case definition that would be more appropriate for epidemiologic studies than the revised El-Escorial criteria (accepted diagnostic measures for determining if someone has ALS). Nelson praised the efforts of the European group (EURALS), whose scientists are planning an impressive effort by conducting population-based studies of ALS in several countries, including Italy, Ireland, Scotland, England and France.
Nelson also described the goals of ACES as part of her presentations at two meeting of the ALS Research Group (ALSRG), one in Boston (March 17-19, 2005) and one in Chicago (October 6-7 2005). Both of these meetings provided an excellent opportunity to solicit feedback from ALS researchers on the research hypotheses and structure of modules for questionnaires that can be used in future investigations of risk factors.
At the most recent meeting in San Diego in April 2006, a list of ongoing studies was received and will be added to the site. Membership applications will also include any ongoing study so these can be kept current on the web site, which has launched.
Nelson and Valerie McGuire, Ph.D., also at Stanford, have developed and refined the core modules to be incorporated into research questionnaires proposed for use by scientists whose primary goal is to investigate environmental and lifestyle risk factors for ALS. The modules solicit demographic characteristics, residence history, occupational history, home pesticide use and chemical exposure, cigarette smoking, alcohol consumption, hormonal and reproductive history (women subjects only), and family history of neurodegenerative diseases, physical activity and history of fractures and electrical injuries. These modules are currently under review by several leading ALS researchers from North America and Europe, whose comments and suggestions will be incorporated.
Nelson and McGuire will be developing expanded modules that contain detailed questions for researchers whose primary objectives require the collection of more in-depth information. They will also develop minimal sets of questions for those investigators who may not be in a position to collect detailed information in every domain. The goal is to have a resource that will be flexible enough that questions can included or excluded depending on the needs of a specific researcher’s project but also keep a structure that will enable researchers to combine data across many studies so that more definitive ALS research questions can be answered.
The web site is being hosted without a fee by the Office of Information Resources and Technology (IRT) at Stanford University, whose web developers have worked to provide the initial structure of the site.
ALSA’s Greater Philadelphia Chapter has provided funding for the project.
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