Alzheimer Research Forum (ARF), or Alzforum is a
website
A website (also written as a web site) is a collection of web pages and related content that is identified by a common domain name and published on at least one web server. Examples of notable websites are Google Search, Google, Facebook, Amaz ...
which uses web technology to accelerate research into
Alzheimer's disease
Alzheimer's disease (AD) is a neurodegeneration, neurodegenerative disease that usually starts slowly and progressively worsens. It is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in short-term me ...
.
History
The website was founded in 1996 by June Kinoshita, funded by an anonymous
philanthropic foundation
A foundation (also a charitable foundation) is a category of nonprofit organization or charitable trust that typically provides funding and support for other charitable organizations through grants, but may also engage directly in charitable act ...
, and launched at the International Conference on Alzheimer's Disease and Related Disorders in
Osaka
is a designated city in the Kansai region of Honshu in Japan. It is the capital of and most populous city in Osaka Prefecture, and the third most populous city in Japan, following Special wards of Tokyo and Yokohama. With a population of 2. ...
, Japan, The forum brings together a team of specialists in
science writing
Science journalism conveys reporting about science to the public. The field typically involves interactions between scientists, journalists, and the public.
Origins
Modern science journalism dates back to '' Digdarshan'' (means showing the d ...
and
editing
Editing is the process of selecting and preparing written, photographic, visual, audible, or cinematic material used by a person or an entity to convey a message or information. The editing process can involve correction, condensation, orga ...
,
data curation Data curation is the organization and integration of data collected from various sources. It involves annotation, publication and presentation of the data such that the value of the data is maintained over time, and the data remains available for re ...
,
information architecture
Information architecture (IA) is the structural design of shared information environments; the art and science of organizing and labelling websites, intranets, online communities and software to support usability and findability; and an emerging ...
,
project management
Project management is the process of leading the work of a team to achieve all project goals within the given constraints. This information is usually described in project documentation, created at the beginning of the development process. Th ...
and technology.
Alzforum was established as an independent neutral
Non-profit organization
A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...
, without affiliation to any specific university or
research institute
A research institute, research centre, research center or research organization, is an establishment founded for doing research. Research institutes may specialize in basic research or may be oriented to applied research. Although the term often i ...
. Its relations with the scientific community include an
advisory board
An advisory board is a body that provides non-binding strategic advice to the management of a corporation, organization, or foundation. The informal nature of an advisory board gives greater flexibility in structure and management compared to th ...
with leaders in the scientific community representing diverse points of view.
At first the site took the form of ‘Papers of the Week’ listings, including
abstracts of all relevant publications (initially manually produced in order to avoid
copyright infringement
Copyright infringement (at times referred to as piracy) is the use of works protected by copyright without permission for a usage where such permission is required, thereby infringing certain exclusive rights granted to the copyright holder, s ...
), commentary, virtual audio
seminar
A seminar is 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 parti ...
s, and a list of seminal papers in Alzheimer's research. The Web's potential for
interactivity
Across the many fields concerned with interactivity, including information science, computer science, human-computer interaction, communication, and industrial design, there is little agreement over the meaning of the term "interactivity", but m ...
was used for informal live chats and commentary on papers by registered users of the site. By the end of the first year there were 1200 users, adding as many as 100 new users a month in the first years of its existence.
Operations
From 1997, the website also began to develop as a community repository, enabling researchers to deposit
data set A data set (or dataset) is a collection of data. In the case of tabular data, a data set corresponds to one or more database tables, where every column of a table represents a particular variable, and each row corresponds to a given record of the ...
s. Currently it maintains several
database
In computing, a database is an organized collection of data stored and accessed electronically. Small databases can be stored on a file system, while large databases are hosted on computer clusters or cloud storage. The design of databases sp ...
s relating to
gene mutation
In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA or viral replication, mitos ...
s, gene association studies,
epidemiological studies
Epidemiology is the study and analysis of the distribution (who, when, and where), patterns and determinants of health and disease conditions in a defined population.
It is a cornerstone of public health, and shapes policy decisions and evidenc ...
,
antibodies
An antibody (Ab), also known as an immunoglobulin (Ig), is a large, Y-shaped protein used by the immune system to identify and neutralize foreign objects such as pathogenic bacteria and viruses. The antibody recognizes a unique molecule of the ...
,
drug trial
Clinical trials are prospective biomedical or behavioral research studies on human participants designed to answer specific questions about biomedical or behavioral interventions, including new treatments (such as novel vaccines, drugs, dieta ...
s, protocols and antecedent biomarker studies. Of particular note are the AlzGene database of genetic studies of Alzheimer's disease, which has been cited more than 1,200 times in the scientific literature, and the AlzRisk database of epidemiologic studies. The forum acts as an integrator of these diverse sources, linking
primary research
Research is " creative and systematic work undertaken to increase the stock of knowledge". It involves the collection, organization and analysis of evidence to increase understanding of a topic, characterized by a particular attentiveness ...
articles to related news, papers, databases, and discussions .
From 2000 onwards a data-driven dynamic system has been used to automatically search and download
PubMed
PubMed is a free search engine accessing primarily the MEDLINE database of references and abstracts on life sciences and biomedical topics. The United States National Library of Medicine (NLM) at the National Institutes of Health maintain the ...
citations into a database, and provide tools for 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 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 the forum and
Massachusetts General Hospital
Massachusetts General Hospital (Mass General or MGH) is the original and largest teaching hospital of Harvard Medical School located in the West End neighborhood of Boston, Massachusetts. It is the third oldest general hospital in the United Stat ...
. Work on this continues with the Scientific Collaboration Framework.
The forum has become a point of reference for researchers into AD. As of June 2013 it has more than 8300 registered users. It is estimated that 30–50% of researchers from a wide range of institutions and countries studying Alzheimer's internationally are registered or active on the site.
The success of Alzforum has resulted in its online disease-specific scientific community framework being cloned in other areas of research into
neurological disorder
A neurological disorder is any disorder of the nervous system. Structural, biochemical or electrical abnormalities in the brain, spinal cord or other nerves can result in a range of symptoms. Examples of symptoms include paralysis, muscle weakn ...
s.
Multiple Sclerosis Discovery Forum,
Pain Research Forum,
Schizophrenia Research Forum Schizophrenia Research Forum is a web knowledge environment dedicated to news, information resources, and discussion about research on schizophrenia.
It hosts a number of resources such as What We Know About Schizophrenia, Animal Models and Drugs in ...
and PD Online (a site for research into
Parkinson's disease
Parkinson's disease (PD), or simply Parkinson's, is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms usually emerge slowly, and as the disease worsens, non-motor symptoms becom ...
, funded by the
Michael J. Fox
Michael Andrew Fox (born June 9, 1961), known professionally as Michael J. Fox, is a Canadian-American retired actor. Beginning his career in the 1970s, he rose to prominence portraying Alex P. Keaton on the NBC sitcom ''Family Ties'' (1 ...
Foundation) are using the same approach
[Das S, McCaffrey PG, Talkington MW, Andrews NA, Corlosquet S, Ivinson AJ, Clark T. (2014) Pain Research Forum: application of scientific social media frameworks in neuroscience; . eCollection 2014]
Free full text
/ref> as Alzforum.
References
Bibliography
* Clark T, Kinoshita J. (2007) Alzforum and SWAN: the present and future of scientific web communities. Brief Bioinform; 8(3):163–71.
* Das S, McCaffrey PG, Talkington MW, Andrews NA, Corlosquet S, Ivinson AJ, Clark T. (2014) Pain Research Forum: application of scientific social media frameworks in neuroscience; {{doi, 10.3389/fninf.2014.00021. eCollection 2014
Free full text
* 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.
* Lars Bertram, Matthew B McQueen, Kristina Mullin, Deborah Blacker & Rudolph E Tanzi. Systematic meta-analyses of Alzheimer disease genetic association studies: the AlzGene database. Nature Genetics 39, 17 – 23 (2007
* Jennifer Weuve, Matthew B. McQueen, Meredith Harrington, Jacqueline O'Brien, Shanshan Li, Melinda Power, Maile Ray, C Knep, June Kinoshita, Deborah Blacker. The AlzRisk database: Web-based catalogue and meta-analysis of findings from epidemiologic studies of non-genetic risk factors for Alzheimer's disease. Alzheimer's & Dementia: The Journal of the Alzheimer's Association. Volume 6, Issue 4, Supplement, Page S125, July 2010
Abstract.
External links
* AlzForu
Medical websites
Alzheimer's and dementia organizations