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The Challenge
Early in 2004, The Muhammad Ali Parkinson’s Research
Center invited Emerge.MD to participate in an RFP to
design, deploy and maintain a world-wide Parkinson’s
Disease Patient Registry. The objective was to store
information pertaining to the diagnosis, medications,
treatments and lifestyle factors of patients with Parkinson’s
Disease so that researchers from all over the world
could jointly participate in the quest for a cure. The
challenge was to create a virtual online point of convergence
where patients would choose to periodically return and
update their own information, thereby enhancing research
efforts.
Our solution
Emerge.MD was awarded this project over all other RFP
responders, including the Cisco Learning Institute.
Our team leveraged Microsoft SharePoint technology to
create an online community for patients with Parkinson’s
Disease. We suggested that our portal should do more
than simply gather information from patients. We proposed
creating a bi-directional information sharing web portal
where patients and caregivers can also learn about this
disease and the latest treatment and research trends.
Patients and their caregivers have a tremendous vested
interest in the knowledge base pertaining to their illness
or the illness of their loved ones. Opening bidirectional
channels of communication with patients and their caregivers
is therefore immensely magnetic - drawing them back
to a website and enhancing data collection for research.
In the design of the actual registry, we staged the
online questionnaire by video recording actual patients
as they filled out the online forms. Our software developers
reviewed these tapes to better understand the physical
limitations of patients with Parkinson’s Disease.
Subsequently, all graphical elements were modified for
maximum patient comfort. On the back end, the database
was designed to be scalable and securely accessible
by researchers from anywhere in the world. Today, we
are pleased to be part of the Muhammad Ali Parkinson’s
Research Center’s ongoing efforts to find a cure
for Parkinson’s Disease. To our knowledge, Emerge.MD
has designed, deployed and is currently maintaining
the only available online Parkinson’s Disease
Patient Registry.
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