Pediatric Informatics: Computer Applications in Child Health (Health ...

34 Pediatric Research and Informatics 449
34.5.1 ISAAC (Internet System for Assessing
Autistic Children)
ISAAC was designed to meet an important and universal need of autism researchers:
the management of data collected on paper forms. This included standard psychometric
instruments with broad use as well as forms designed by single researchers
for their own specific studies. After reviewing the needs of autism researchers in
general and the AGRE project in particular, the following initial functions were
developed:
Form data management
Data validation
Automated scoring features for psychometric instruments
User management (including role based functions)
Data sharing features for multicenter studies or for researchers who otherwise
want to share data
Capacity to serve as a shared data warehouse
Detailed and version specific codebooks for deciphering data
Ability to protect proprietary content of the owners of psychometric
instruments
To facilitate the integrity of this data system, all content was managed with a library
of forms and questions which allowed us to repurpose content for everything from
building dynamic data entry screens to automated download areas. The system
was built using basic Web technology: Cold Fusion and a Microsoft SQL Server
database, both hosted on a single NT server.
It is important to understand the dynamic interplay of content, functionality,
and the contribution of varied projects that facilitated ISAAC’s growth. Each new
research project benefited from the efforts of those that had preceded it through savings
in cost and effort in form design and programming. Many of the psychometric
forms used in autism are already in widespread use and, once in existence, could be
used at no cost, allowing time, money, and energy to be spent on research itself.
A philosophy of sharing for the greater good was essential. We were, in fact,
demanding something of a paradigm shift from participants, as most researchers are
accustomed to a competitive atmosphere where their work is concerned. Although
early adopters experienced some anxiety about their contributions benefiting
unknown colleagues and competitors, they forged ahead. It was made clear to investigators
that their contributions in extending ISAAC functionality or content would
be shared with other researches at no cost. Without early adopters’ generosity of
spirit and willingness to risk something new and untried, ISAAC would never have
succeeded. The M.I.N.D. Institute of U.C. Davis, led lead by Dr. David Amaral,
played a pivotal role by adopting ISAAC while it was still a very young project,
contributing to it financially and promoting ISAAC’s philosophy of sharing. (CAN
subsidized most of ISAAC’s start up cost, while the bulk of ongoing expenses was
supported financially by the user-base.)