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FARAFARA Cure FA

All-volunteer IT Coalition Builds Computer Network Critically Needed for Friedreich’s Ataxia Medical Research

Washington, D.C. — It’s called FACE IT or the Friedreich’s Ataxia Clinical Enterprise (FACE) IT Program, and it may someday result in the saving of lives of Friedreich’s ataxia patients.

The FACE IT program involves a creative technical application of IT software and hardware, along with the talents and energies of an all-volunteer IT workforce of EDS, Microsoft and university employees. They are working with medical experts across the country in developing a secure networked computer system to automate the collection and sharing of research data at medical centers across the country.

 

"Up until now investigators have collected data on their patients and enter the data manually into a hardcopy spreadsheet. It was all painstaking slow and cumbersome, and not readily available to other researchers" said Ron Bartek, President of the Friedreich’s Ataxia Research Alliance, which is underwriting the costs of some of the computer equipment. "FACE IT is helping leapfrog research forward. It brings increased hope and promising results to patient families everywhere. It’s being done by IT volunteers who want to make a difference."

Friedreich's ataxia is a hereditary disease that often first becomes noticeable as a balance and coordination problem when children are in elementary school. Further loss of strength and coordination in all four extremities usually forces them into wheelchairs by their teens, while the disorder impairs vision, hearing and speech as it progresses. It is frequently associated with severe heart disease, scoliosis, and diabetes. In the later stages of the disease, patients are usually completely incapacitated, often dying of cardiac failure. Average life expectancy extends only to early adulthood. However, some people with less severe symptoms of Friedreich's ataxia live much longer. At the present time, there is no effective treatment or cure for Friedreich's ataxia.

The FACE IT professionals are currently working with medical experts at seven diverse clinical centers across the United States as well as the National Institutes of Health (NIH) in developing clinical measures or "scales" to track the effects of Friedreich’s ataxia as it progresses in patients. The work serves as a foundation for all future research because it provides a mechanism for judging the effectiveness of any future treatments.

The current, multi-center clinical measures study being supported by the FACE IT program is being led by Dr. David Lynch at the Children’s Hospital of Philadelphia and University of Pennsylvania and also involves six other centers around the United States — Emory University, UCLA, and the Universities of Iowa, Minnesota, Mississippi, and Texas. In addition to Dr. Lynch in Philadelphia, the study’s Investigators are Dr. George (Chip) Wilmot (Emory); Dr. Susan Perlman (UCLA); Dr. Henry Paulson (U. of Iowa); Dr. Christopher Gomez (U. of Minnesota); Dr. S.H. (Sub) Subramony (U. of Mississippi); and Dr.Tetsuo (Tee) Ashizawa (U. of Texas).

The FACE IT team also coordinated its IT applications with the NIH’s investigators in the National Institute of Neurological Disorders and Stroke, where the first phase of a clinical trial of a promising drug in Friedreich’s ataxia is underway.

The People of the Solution

In February 2003, while attending an international scientific conference that gathered 100 leading Friedreich’s ataxia researchers from twelve countries, Bill Hartnett, an EDS business analyst learned of the urgent need for an effective IT solution in Friedreich’s ataxia research. Bill’s co-worker and friend, Margaret Ferrarone, has two daughters with Friedreich’s ataxia, and she also volunteered to take a leading role in the project.

Bill also explained his vision to some of his EDS co-workers, and there was no shortage of EDS volunteers that stepped forward immediately to lend their personal time and expertise to develop the Web-based solution required. Marianne Wilcox, EDS chief technologist, stepped up to provide key oversight and database design. Jill Werner, an EDS project manager, assisted in the database design.

As the project advanced, Leo Bellew, an EDS architect, assumed the lead role in developing the system, and Andrei Coler, Phil Graham, Marty Ohman and Linda Guest joined the project to assist with the system development. Sherri Stone, an EDS database administrator, provided database development and support. When the system was ready for testing, EDS System Tester Christine Ward led the way, with support from Dawn Catanese, Alice Bearce, Rich Dusse, and Craig Dennstedt.

Vital Partnerships

When Microsoft employee, Kerry Westfall, a Friedreich’s ataxia patient himself, learned of FACE IT, he was eager and able to help. Kerry provided initial project architecture design and set the technology platform. Kerry also was able to provide Microsoft products at reduced prices which increased the program’s speed and reduced its costs. In short, Kerry’s architecture design and the Microsoft materials he provided were the foundation needed to bring FACE IT from dream to reality.

Hosting and supporting the infrastructure is the technical team in the Children’s Hospital of Philadelphia’s Information Systems Department. Finally, an essential force behind FACE IT, from establishing the scope, providing the project requirements, obtaining support from doctors, clinicians and IT staff, was Jennifer Farmer, Medical Professional Coordinator at the University of Pennsylvania.

Following successful application in the United States, the FACE IT program will be transitioned to applications in Europe, Australia and elsewhere so that its benefits are enjoyed on a global basis.

About FARA

The Friedreich’s Ataxia Research Alliance (FARA) is a 501(c)(3), non-profit, charitable organization dedicated to accelerating research leading to treatments and cures for Friedreich's Ataxia (FRDA) and the related sporadic ataxias. http://www.FAResearchAlliance.org

Contact

Ronald Bartek
President, Friedreich’s Ataxia Research Alliance
(703) 413-4468
fara@FAResearchAlliance.org

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