News

Online Autism Registry Opens Door on Research


 

The network is free to all users, and all information provided is governed by the privacy and security rules of the Health Insurance Portability and Accountability Act.

Joan DiPietro, R.N., who has experience implementing a surgical information system in a hospital, participated in the beta testing for IAN and said that it satisfied her concerns about privacy. She admits being cautious about providing any information on her son and on his diagnosis of Asperger's syndrome, and she was curious about what questions would be asked and how the information would be passed back and forth.

Still, she felt it was safe, easy to use, and provided a variety of content in the margins, such as frequently asked questions, that moves a parent through the process.

Ultimately, IAN may help sharpen the public's focus on the reality that there is no magic cure for autism spectrum disorders but rather a course of scientific discovery that must be followed. “If there is anything that we can eventually find that is causing all these children to have autism, it's going to happen through research as opposed to someone saying they have the magic answer,” Ms. DiPietro said in an interview.

Pages

Recommended Reading

Guidelines Urge Screening For Violence in Families
MDedge Family Medicine
Early Diagnosis Is Central to New ADHD Guidelines
MDedge Family Medicine
Posthurricane Mental Services Funds Unused
MDedge Family Medicine
Medications for Addictions Are Safer and More Effective
MDedge Family Medicine
Registry Confirms Vagal Nerve Stimulation's Safety
MDedge Family Medicine
Review Backs Varenicline for Smoking Cessation
MDedge Family Medicine
Don't Let 'Dusters' Get Swept Under the Carpet
MDedge Family Medicine
Studies Quantify Use of Sleep Aids in Children : Insomnia is cited as a major problem in young patients, of whom many, including preschoolers, are medicated.
MDedge Family Medicine
Consider Behavioral Strategies First Line for Pediatric Insomnia
MDedge Family Medicine
Support for Brain Stimulation Therapies Wavering
MDedge Family Medicine