State’s First Volunteer Autism Registry and Resource Site Debuts

State's First Volunteer Autism Registry and Resource Site Debuts

LITTLE ROCK, AR. (Feb. 3, 2011) - Arkansas families affected by autism have their first chance to participate in a volunteer registry that will track how many people in the state have autism spectrum disorders with the debut of a new website, ArkansasAutismAlliance.org. Families will also find a host of autism resources compiled on the site, which is a collaboration between Arkansas Children's Hospital (ACH), the Arkansas Children's Hospital Research Institute (ACHRI) and the University of Arkansas for Medical Sciences (UAMS).

"This website will help families understand what's happening with autism in Arkansas," said Jill James, PhD, director of the Autism Metabolic Genomics Laboratory at ACHRI, a professor of Pediatrics in the UAMS College of Medicine, and an autism researcher who developed the site. "Until now, there has not been a comprehensive website where families could go to find the resources and services that are available in Arkansas, the latest on credible research and the autism events that affect us here in the state."

At ArkansasAutismAlliance.org, families can find links to local organizations, support groups, opportunities to participate in research, bios of Arkansas autism specialists and more.

The registry component will help researchers at the collaborating institutions find out more about how many people in Arkansas have autism spectrum disorders and where they live.

"Right now, we don't even know how many families in Arkansas are affected by autism," Dr. James said. "The registry could be a huge resource for helping us allocate resources to communities and understand where the needs exist."

Families are encouraged to explore ArkansasAutismAlliance.org and volunteer their information in the registry. The info will be maintained in a database, and families can agree to be contacted if they wish to participate in surveillance activities and research projects.

This registry was developed using REDCap Survey (Research Electronic Data Capture) supported by the Center for Clinical and Translational Research at the University of Arkansas for Medical Sciences (NCRR/NIH 1 UL1 RR029884).

Arkansas Children's Hospital is the only pediatric medical center in Arkansas and one of the largest in the United States serving children. The campus spans 28 city blocks and houses 316 beds, a staff of approximately 500 physicians, 80 residents in pediatrics and pediatric specialties and more than 4,000 employees. The private, nonprofit healthcare facility boasts an internationally renowned reputation for medical breakthroughs and intensive treatments, unique surgical procedures and forward-thinking medical research - all dedicated to fulfilling our mission of enhancing, sustaining and restoring children's health and development. ACH recently ranked No. 85 on FORTUNE 100 Best Companies to Work For®. For more information, visit www.archildrens.org.

ACHRI provides a research environment on the ACH campus to meet the needs of the UAMS faculty.  Research scientists at ACHRI conduct clinical, basic science, and health services research for the purpose of treating illnesses, preventing disease and improving the health of children everywhere. 

UAMS is the state's only comprehensive academic health center, with colleges of Medicine, Nursing, Pharmacy, Health Related Professions and Public Health; a graduate school; a 540,000-square-foot hospital; a statewide network of regional centers; and six institutes: the Winthrop P. Rockefeller Cancer Institute, the Jackson T. Stephens Spine & Neurosciences Institute, the Myeloma Institute for Research and Therapy, the Harvey & Bernice Jones Eye Institute, the Psychiatric Research Institute and the Donald W. Reynolds Institute on Aging. UAMS has 2,836 students and 761 medical residents. It is the state's largest public employer with more than 10,000 employees, including nearly 1,150 physicians who provide medical care to patients at UAMS, Arkansas Children's Hospital, the VA Medical Center and UAMS' Area Health Education Centers throughout the state. Visit www.uams.edu or www.uamshealth.com.

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