http://www.alzforum.org
Mission: To create an online scientific
community dedicated to developing treatments and preventions
for Alzheimer’s disease.
From its inception, we felt it was important for the Forum
to be
- Not-for-profit
- Independent
- Professionally managed
- Diverse and inclusive
- Collaborative
The initial focus was to create a web-based “metajournal”
that compiles weekly lists of newly published articles and
ties them into an information network of news, commentary,
discussion forums and data directories. For Example:
Papers of the Week
http://www.alzforum.org/pap/result.asp?type=current
Weekly updated list of citations with commentary by the
research community.
Research News
http://www.alzforum.org/new/default.asp#researchnews
Our own independently reported news on important developments
in Alzheimer research and related fields of applied and
basic science.
Live Discussions
http://www.alzforum.org/res/for/journal/default.asp
Forums on hot scientific topics and controversies. We
use both live chat rooms and email postings, to accommodate
as many participants as possible.
Data directory: Mutations
http://www.alzforum.org/res/com/mut/default.asp
All reported mutations in genes that cause familial Alzheimer’s
disease and frontotemporal dementia with Parkinsonism (FTDP-17).
Although the intended audience is Alzheimer researchers,
the site has always been open to the public at large. We
want information to empower patients and caregivers, and
so have developed some services with a more diverse readership
in mind:
Disease Management
http://www.alzforum.org/dis/default.asp
A guide for the public on basic facts, diagnosis, treatment
and care giving
Drugs in Clinical Trials
http://www.alzforum.org/dis/tre/drc/default.asp
A searchable database of drugs in clinical trials (Phase
II and beyond) for Alzheimer therapy.
What’s missing: information on trial locations.
Ask the Expert
http://www.alzforum.org/dis/exp/ask/default.asp
Questions about diagnosis and treatment are answered by
experienced practitioners. We will be adding a Product Review
section to provide facts and independent evaluations of
commercial diagnostic products.
Hypothesis Factory
http://www.alzforum.org/res/adh/hyp/default.asp
A place where experts and lay people alike can post anecdotal
observations and speculations. Who knows where the next
good idea might come from?
ElderCare Online joint projects
http://www.ec-online.net/chat.html
The Forum collaborates with ElderCare online to maintain
a chat. Chats range from support groups and caregiver advice
to highly technical scientific discussions. Our philosophy
is that having a shared resource helps bring together communities
that need to be more informed about one another.
Future Directions
We will invest in web-based systems to forge closer ties
between patients, caregivers, physicians and researchers.
We will do this in a collaborative way, in close consultation
with all of the communities we will be serving.
Some proposals:
- Research subject outreach and education. Patients and
families are vitally important for research directed at
understanding the genetic and environmental factors that
contribute to Alzheimer’s disease. We propose to
develop information for individuals and families explaining
why their participation as research subjects is so important,
what to expect, what informed consent means, what intellectual
property issues might arise, and so forth. We will post
a national directory of Alzheimer genetics research centers.
- Capturing patient data. We propose to develop a secure
web site where physicians can enter data on patients’
medication information and clinical status using standardized
forms. The system would enable physicians and researchers
to analyze the effects of different medications on disease
progression in patients who are not enrolled in clinical
trials. This could be an interesting and cost-effective
adjunct to clinical trials. Our model is a system developed
by the ALS Therapy Development Foundation.
- Clinical trial sites database. To build on our drug
database, we want to include comprehensive information
on clinical trial sites. This is not trivial: drug companies
are reluctant to post this information publicly. We would
like to explore ways to make this information available
to patients who need it, while safeguarding companies’
proprietary information.
Conclusions
The Web is a powerful medium that has much to offer, but
information is unmonitored and must be approached with common
sense guidelines.
This technology also has great potential to transform biomedical
research in ways that are just beginning to be explored.
All of us who have an interest in how this technology is
deployed need to be involved in designing the tools that
will tap the power of the Web.
