Alzheimer Research Forum
Encyclopedia
Alzheimer Research Forum (ARF), or Alzforum as it is known among Alzheimer’s researcher
s, 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 abstract
s of all relevant publications (initially manually produced in order to avoid copyright infringement
), commentary, virtual audio seminar
s, 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 set
s. Currently Alzforum maintains several database
s 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 disorder
s. 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.orghttp://www.alzforum.org
www.sciencecollaboration.orghttp://www.sciencecollaboration.org
www.schizophreniaforum.orghttp://www.schizophreniaforum.org
www.pdonlineresearch.orghttp://www.pdonlineresearch.org
Researcher
A researcher is somebody who performs research, the search for knowledge or in general any systematic investigation to establish facts. Researchers can work in academic, industrial, government, or private institutions.-Examples of research institutions:...
s, is a website
Website
A website, also written as Web site, web site, or simply site, is a collection of related web pages containing images, videos or other digital assets. A website is hosted on at least one web server, accessible via a network such as the Internet or a private local area network through an Internet...
which exploits to the fullest the potential of web technology to accelerate research into Alzheimer's disease
Alzheimer's disease
Alzheimer's disease also known in medical literature as Alzheimer disease is the most common form of dementia. There is no cure for the disease, which worsens as it progresses, and eventually leads to death...
. Founded in 1996, and launched at the International Conference on Alzheimer’s Disease and Related Disorders in Osaka
Osaka
is a city in the Kansai region of Japan's main island of Honshu, a designated city under the Local Autonomy Law, the capital city of Osaka Prefecture and also the biggest part of Keihanshin area, which is represented by three major cities of Japan, Kyoto, Osaka and Kobe...
, Japan
Japan
Japan is an island nation in East Asia. Located in the Pacific Ocean, it lies to the east of the Sea of Japan, China, North Korea, South Korea and Russia, stretching from the Sea of Okhotsk in the north to the East China Sea and Taiwan in the south...
, Alzforum was born out of a conviction that the World Wide Web
World Wide Web
The World Wide Web is a system of interlinked hypertext documents accessed via the Internet...
, which was beginning to transform business communication
Business communication
Business Communication: communication used to promote a product, service, or organization; relay information within the business; or deal with legal and similar issues. It is also a means of relaying between a supply chain, for example the consumer and manufacturer.Business Communication is known...
, 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
Editing
Editing is the process of selecting and preparing written, visual, audible, and film media used to convey information through the processes of correction, condensation, organization, and other modifications performed with an intention of producing a correct, consistent, accurate, and complete...
, data curation
Data curation
In science, Data curation is a term used to indicate the process of extraction of important information from scientific texts such as research articles by experts and converting them into an electronic form such as an entry of a biological database....
, information architecture
Information Architecture
Information architecture is the art of expressing a model or concept of information used in activities that require explicit details of complex systems. Among these activities are library systems, Content Management Systems, web development, user interactions, database development, programming,...
, project management
Project management
Project management is the discipline of planning, organizing, securing, and managing resources to achieve specific goals. A project is a temporary endeavor with a defined beginning and end , undertaken to meet unique goals and objectives, typically to bring about beneficial change or added value...
and technology
Technology
Technology is the making, usage, and knowledge of tools, machines, techniques, crafts, systems or methods of organization in order to solve a problem or perform a specific function. It can also refer to the collection of such tools, machinery, and procedures. The word technology comes ;...
.
Alzforum was established as a not-for-profit
Non-profit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
, independent and neutral organisation, without affiliation to any specific university
University
A university is an institution of higher education and research, which grants academic degrees in a variety of subjects. A university is an organisation that provides both undergraduate education and postgraduate education...
or research institute
Research institute
A research institute is an establishment endowed for doing research. Research institutes may specialize in basic research or may be oriented to applied research...
. Further steps to establish trust with the scientific community
Scientific community
The scientific community consists of the total body of scientists, its relationships and interactions. It is normally divided into "sub-communities" each working on a particular field within science. Objectivity is expected to be achieved by the scientific method...
included an advisory board
Advisory board
An advisory board is a body that advises the board of directors and management of a corporation but does not have authority to vote on corporate matters, nor a legal fiduciary responsibility...
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 abstract
Abstract (summary)
An abstract is a brief summary of a research article, thesis, review, conference proceeding or any in-depth analysis of a particular subject or discipline, and is often used to help the reader quickly ascertain the paper's purpose. When used, an abstract always appears at the beginning of a...
s of all relevant publications (initially manually produced in order to avoid copyright infringement
Copyright infringement
Copyright infringement is the unauthorized or prohibited use of works under copyright, infringing the copyright holder's exclusive rights, such as the right to reproduce or perform the copyrighted work, or to make derivative works.- "Piracy" :...
), commentary, virtual audio seminar
Seminar
Seminar is, generally, a form of academic instruction, either at an academic institution or offered by a commercial or professional organization. It has the function of bringing together small groups for recurring meetings, focusing each time on some particular subject, in which everyone present is...
s, and a list of seminal papers in Alzheimer’s research. The Web’s potential for interactivity
Interactivity
In the fields of information science, communication, and industrial design, there is debate over the meaning of interactivity. In the "contingency view" of interactivity, there are three levels:...
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 set
Data set
A data set is a collection of data, usually presented in tabular form. Each column represents a particular variable. Each row corresponds to a given member of the data set in question. Its values for each of the variables, such as height and weight of an object or values of random numbers. Each...
s. Currently Alzforum maintains several database
Database
A database is an organized collection of data for one or more purposes, usually in digital form. The data are typically organized to model relevant aspects of reality , in a way that supports processes requiring this information...
s relating to gene mutations, gene association studies, epidemiological studies
Epidemiology
Epidemiology is the study of health-event, health-characteristic, or health-determinant patterns in a population. It is the cornerstone method of public health research, and helps inform policy decisions and evidence-based medicine by identifying risk factors for disease and targets for preventive...
, antibodies
Antibody
An antibody, also known as an immunoglobulin, is a large Y-shaped protein used by the immune system to identify and neutralize foreign objects such as bacteria and viruses. The antibody recognizes a unique part of the foreign target, termed an antigen...
, drug trials, protocols and antecedent biomarker studies. Alzforum also acts as an integrator of these diverse sources, linking primary research
Primary research
Primary research consists in research to collect original primary data. It is often undertaken after the researcher has gained some insight into the issue by collecting secondary data...
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
PubMed
PubMed is a free database accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine at the National Institutes of Health maintains the database as part of the Entrez information retrieval system...
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
Massachusetts General Hospital
Massachusetts General Hospital is a teaching hospital and biomedical research facility in the West End neighborhood of Boston, Massachusetts...
. 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
Debate
Debate or debating is a method of interactive and representational argument. Debate is a broader form of argument than logical argument, which only examines consistency from axiom, and factual argument, which only examines what is or isn't the case or rhetoric which is a technique of persuasion...
in the research community allowing the most important competing hypotheses
Hypothesis
A hypothesis is a proposed explanation for a phenomenon. The term derives from the Greek, ὑποτιθέναι – hypotithenai meaning "to put under" or "to suppose". For a hypothesis to be put forward as a scientific hypothesis, the scientific method requires that one can test it...
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 disorder
Neurological disorder
A neurological disorder is a disorder of the body's nervous system. Structural, biochemical or electrical abnormalities in the brain, spinal cord, or in the nerves leading to or from them, can result in symptoms such as paralysis, muscle weakness, poor coordination, loss of sensation, seizures,...
s. Schizophrenia Research Forum
Schizophrenia Research Forum
Schizophrenia Research Forum is a website dedicated to convey information about schizophrenia.It hosts the SzGene Database, which provides a comprehensive, unbiased and regularly updated field synopsis of genetic association studies performed in schizophrenia with hundreds of up-to-date...
and PD Online (a site for research into Parkinson's disease
Parkinson's disease
Parkinson's disease is a degenerative disorder of the central nervous system...
, funded by the Michael J. Fox
Michael J. Fox
Michael J. Fox, OC is a Canadian American actor, author, producer, activist and voice-over artist. With a film and television career spanning from the late 1970s, Fox's roles have included Marty McFly from the Back to the Future trilogy ; Alex P...
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.orghttp://www.alzforum.org
www.sciencecollaboration.orghttp://www.sciencecollaboration.org
www.schizophreniaforum.orghttp://www.schizophreniaforum.org
www.pdonlineresearch.orghttp://www.pdonlineresearch.org