Alzheimer Research Forum Networking for a Cure

The Alzheimer Research Forum is a non-profit organization established at <http://www.alzforum.org/>. The purpose of the forum is to support the information needs of researchers and to promote openness and collaboration with colleagues worldwide to accelerate their common search for effective treatments for Alzheimer's disease and narrow the gap between clinical and basic science research. The forum is designed to engender new kinds of collaboration and communication within the Alzheimer's disease and related neuroscience research communities by employing the latest Internet technology.

The forum is funded by the charitable foundations of Fidelity Investments in Boston, Massachusetts and was launched in July, 1996, at the Fifth International Conference on Alzheimer's Disease and Related Disorders in Osaka, Japan. Since its inception, the use of the site has grown steadily, currently with over 640 registered users. This presentation will focus on the development, goals, design, and future visions of this forum.

DEVELOPMENT:

The concept of developing an online forum for Alzheimer's Disease researchers was formed in late 1995. A consultant, who later became the project manager of this forum, was hired to survey the needs of the target community. After a series of surveys, interviews, and background work, a project team was formally established in early 1996 to develop the site. The project team includes professionals from technology, graphic design, and library fields. A scientific advisory broad was also established. After several months of intense development work, a pilot version of the site was officially launched in July, 1996.

GOALS and DESIGNS:

The Alzheimer Research Forum is designed to achieve two major goals:

1. Increase collaboration and communication within and across disciplines in Alzheimer's

Disease and related neurological science
2. provide added-value information for the community

The Forum is designed to take full advantages of online and Internet technologies. Several innovative ideas were implemented on that site. For example, major presentations for the 5th International Conference on Alzheimer's Disease and Related Disorders were selected and slides and summaries of the talks were added to the Web sites before the conference. These presentations were made available online at the same time of the conference. Users of the forum not only have the ability to view these presentation summaries and virtual slide talks online, they also were able to carry online "Q&A" with the authors after the presentations. Several discussion forums, each of which focused on a specific subjects and hosted by a scientist, were also held via the forum. Notes of these discussion were edited and posted on the forum.

The Forum also aims at providing added value information to scientists. Currently, scientific research results are recorded in many different formats. With the vast amount of published papers and databases, scientists often have limited time to read and digest all the information related to their research. They increasingly also have to face the diverse technological environment to retrieve and manipulate data such as gene sequences and protein structures. The forum aims at reviewing, selecting, enhancing, and making available the information which is related to the users of the forum. Information which is currently available via the forum includes news digest, milestone papers, conference summaries, image libraries.

FUTURE VISIONS

The success of the site will depend on its usefulness to its target users. The site has posted many of the ideas developed during the developmental stage of the project and continues to receive feedback from the users. These ideas include: a "don't try this" section where users could post negative findings: an "anomalous results" section for singular, unreplicated findings a brain bank of an online repository of brain images Yenta, where potential collaborators are identified top investigators' choice of best 10 articles of the past month, and innovative search interface to diverse databases.

The Forum thrives to achieve its mission to accelerate the finding of a cure for Alzheimer's Disease. The project team, together with the online community developed at the forum, will continue to explore new and innovative ways for the ongoing development of the forum.

Elizabeth Wu
Associate Director for Research and Systems
Harvard University

webmgr@cni.org