Alzheimer Research Forum

Alzheimer Research Forum (ARF), or Alzforum as it is known among Alzheimer’s researchers, is a website which exploits to the fullest the potential of web technology to accelerate research into Alzheimer's disease. Founded in 1996, and launched at the International Conference on Alzheimer’s Disease and Related Disorders in Osaka, Japan, Alzforum was born out of a conviction that the World Wide Web, which was beginning to transform business communication, could be harnessed for scientific research. The brainchild of June Kinoshita, who now serves as Executive Editor, and funded by an anonymous philanthropic foundation, Alzforum currently brings together a team of specialists in science writing and editing, data curation, information architecture, project management and technology.

Alzforum was established as a not-for-profit, independent and neutral organisation, without affiliation to any specific university or research institute. Further steps to establish trust with the scientific community included an advisory board with established leaders in the scientific community representing diverse points of view, and the highest standards in editing and moderating the website. Alzforum started out as a neutral zone where Alzheimer’s researchers could obtain news about the latest development in Alzheimer’s research across the world.

At first this took the form of ‘Papers of the Week’ listings, including abstracts of all relevant publications (initially manually produced in order to avoid copyright infringement), commentary, virtual audio seminars, and a list of seminal papers in Alzheimer’s research. The Web’s potential for interactivity was soon put to use for informal live chats and commentary on papers by registered users of the Alzforum site, which by the end of the first year, already numbered 1200.

The numbers of registered users quickly grew, with as many as 100 new users a month in the first years of its existence. From 1997, the website also began to develop as a community repository, enabling researchers to deposit data sets. Currently Alzforum maintains several databases relating to gene mutations, gene association studies, epidemiological studies, antibodies, drug trials, protocols and antecedent biomarker studies. Alzforum also acts as an integrator of these diverse sources, linking primary research articles to related news, papers, databases, discussions and so on.

From 2000 onwards a data-driven dynamic system has been used to automatically search and download PubMed citations into a database every night, and provide tools to allow editors to post news and comments and crosslink them to related material. The development of semantic web tools is a current and ongoing development. These tools assist in the identification of hypotheses and related evidence in papers and discussions. SWAN (Semantic Web Applications in Neuromedicine) has resulted from a collaboration between Alzforum and Massachusetts General Hospital. Work on this continues with the Scientific Collaboration Framework.

Alzforum has succeeded in becoming a point of reference for researchers into AD, and is increasingly an essential resource for the community. As of February 2010 it has more than 5900 registered users. It is estimated that 30-50% of researchers studying Alzheimer’s internationally consult the site, are registered on it, or are active on it. Researchers using Alzforum also come from an extremely wide range of institutions and countries. An important achievement of the site is the use of web resources to harness debate in the research community allowing the most important competing hypotheses to emerge, and for research to be focused on the most promising lines of enquiry.

The success of Alzforum has resulted in its approach being cloned in other areas of research into neurological disorders. Schizophrenia Research Forum and PD Online (a site for research into Parkinson's disease, funded by the Michael J. Fox Foundation) are using the same approach as Alzforum.


Bibliography

Clark T, Kinoshita J. (2007) Alzforum and SWAN: the present and future of scientific web communities. Brief Bioinform; 8(3):163–71.

Kinoshita, June and Gabrielle Strobel. (2006) Alzheimer Research Forum: A Knowledge Base and e-Community for AD Research,” Alzheimer: 100 Years and Beyond. Eds. Jucker M, Beyreuther K, Haass C, Nitsch R, Christen Y. Springer-Verlag, Berlin Heidelberg.

Kinoshita, J. & Clark, T., (2007) Alzforum: E-Science for Alzheimer Disease. From Methods in Molecular Biology: Neuroinformatics. Edited by C.J.Crasto. Totowa, NJ: Humana Press.


Websites:

www.alzforum.org www.sciencecollaboration.org www.schizophreniaforum.org www.pdonlineresearch.org

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