When the Friedreich's Ataxia Research Alliance (FARA) recognized the value of having a patient registry process and data repository to collect patient information globally, they called their friends at EDS for a technical solution. FARA knew that having this information at its fingertips would give them the ability to identify candidates for clinical studies within a short timeframe as well as enable outreach activities through education materials and newsletters.
After gathering FARA's high level requirements, a team of EDS volunteers from Rochester, N.Y., turned to their local education partner - Rochester Institute of Technology (RIT) - to see if the project would be a fit for RIT's B. Thomas Golisano College of Computing and Information Sciences' Software Engineering Department's senior capstone project.
RIT's undergraduate software engineering curriculum calls for students to work as a team, much like they would in a real job environment. The senior capstone project is completed over a 20-week period. The educational value is further enhanced with the curriculum requirement that students complete the project for a real client.
EDS' Steve Baiera, who oversees student projects as part of the RIT/EDS partnership, worked with Tom Reichlmayr, RIT professor of software engineering and coordinator of the Senior Capstone Projects. Once the project was selected, EDS provided two mentors, Michelle Whalen and John Manos, to work with RIT software engineering students Tracy Rericha, Elaine Simone, Sandy Morris, Steven Coad, and faculty coach, Lei Wu, professor of software engineering.
"RIT and EDS have developed a very strong relationship during the past several years so EDS was delighted that we could draw on the skills of the RIT students and the Software Engineering Capstone Project. The Patient Registry Project was a great example of the collaborative effort between RIT and EDS," said Marianne Wilcox, an EDS Enterprise Architect and the EDS/RIT education partnership sponsor.
The patient registry will be used to collect some basic information for patients diagnosed with Friedreich's ataxia. The registry will allow patients to put their information into the hands of researchers who will be conducting clinical research trials — getting patients closer to treatments for FA. Recruitment for clinical trials can often take a long period of time — especially for a rare disease like FA. The registry will expedite the process considerably and will allow researchers to consolidate information for research to aid in their pursuit to develop treatments and an eventual cure for the disease.
FARA is a nonprofit organization dedicated to the pursuit of educational, scientific and research activities leading to treatments and a possible cure for Friedreich's ataxia and the related sporadic ataxias. As a patient advocacy group, FARA raises public awareness through a variety of activities, including congressional testimony.
Friedreich's ataxia is a degenerative neurological disease that affects about one in 50,000 people, typically attacking children between the ages of five and 15. There is no known treatment or cure currently, although worldwide research is ongoing.
This is not the first time that EDS has shared their expertise to facilitate FARA research. In 2003, Bill Hartnett, an EDS project manager was compelled to learn more about FA. His interest grew from a friendship with co-worker Margaret Ferrarone, an EDS human resources business partner, whose two daughters were born with Friedreich's Ataxia. In 2004 the Ataxia Scales system, a global patient data system that collects and analyzes baseline measures of the disease, was implemented.
Thanks to the generosity and hard work of EDS employees and RIT students, these systems bring increased hope and promising results to patients and their families worldwide.
EDS employees Bill Hartnett and John Cubbin are on the FARA board of directors.
Patient Registry Team (L-R): John Manos (EDS), Elaine Simone (RIT), Tracy Rericha (RIT), Steve Coad (RIT), Sandy Morris (RIT), Michelle Whalen (EDS)
The Friedreich's Ataxia Research Alliance (FARA) is a 501(c)(3), non profit, tax-exempt organization dedicated to the pursuit of educational, scientific and research activities leading to treatments for Friedreich's ataxia. FARA also serves as a patient advocacy group to educate the public, elected representatives, and other government officials regarding Friedreich's ataxia and the importance of funding biomedical research. FARA works closely with the National Institutes of Health and other organizations in the United States and elsewhere that are supportive of Friedreich's ataxia research. www.curefa.org
EDS (NYSE: EDS) is a leading global technology services company delivering business solutions to its clients. EDS founded the information technology outsourcing industry more than 40 years ago. Today, EDS delivers a broad portfolio of information technology and business process outsourcing services to clients in the manufacturing, financial services, healthcare, communications, energy, transportation, and consumer and retail industries and to governments around the world. Learn more at eds.com.
RIT's B. Thomas Golisano College of Computing and Information Sciences, the largest comprehensive computing college in the nation, was created in 2001 with a $14 million gift from B. Thomas Golisano, founder and chairman of Paychex Inc. The Golisano College offers a Ph.D. program in computing and information sciences. At the graduate level, programs are offered in computer science, information technology, software development and management, computer security and information assurance, and learning and knowledge management systems as well as undergraduate degree programs in computer science, information technology, applied network and system administration, software engineering, and new media. Founded in 1829, RIT is internationally recognized as a leader in computing, engineering, imaging technology, fine and applied arts and education for the deaf. RIT enrolls 15,300 students in more than 340 undergraduate and graduate programs. http://www.rit.edu
President, Friedreich’s Ataxia Research Alliance