Navigation Links
First national autism registry shows notable impact on autism research in opening year
Date:3/31/2008

(Baltimore, MD) On April 2, the Kennedy Krieger Institute will commemorate World Autism Awareness Day and National Autism Awareness Month with the one-year anniversary of the Interactive Autism Network (IAN), the first national autism registry.

Launched in April 2007 by the Kennedy Krieger Institute, the IAN Project (www.IANProject.org) facilitates the exploration of causes, treatments, and the search for a possible cure to autism. As an online network that links parents to researchers, the IAN Project is accelerating the pace of autism research in two important ways. First, parents the people who know the most about their child provide valuable data to researchers without having to leave their home or office. Second, children with autism are matched with local and national research studies for which they qualify.

To date, more than 22,000 individuals have joined the IAN Project, making it the largest collection of autism data in the world. Represented in the registry are families from all 50 states, as well as the District of Columbia, American Samoa, Northern Mariana Islands, Guam, Marshall Islands and Palau.

By facilitating opportunities for parents of children with autism and researchers to connect, the IAN Project has taken a lead role in fostering dialogue and mutual understanding amongst the many stakeholders in the autism community, said Dr. Paul Law, Director of the Interactive Autism Network at Kennedy Krieger Institute in Baltimore, Maryland. It has ultimately created an invaluable opportunity to change the face of research as we know it.

From data collected thus far, the IAN Project has revealed significant insights, including:

  • Maternal Depression: Of those enrolled in the IAN Project, 46 percent of mothers with children with autism reported a diagnosis of depression, versus the general population where approximately 20 percent of women are faced with clinical depression in their lifetime.

  • Autism Treatments: Most children with autism are on 5 or more different treatments at any given time, 67 percent of which are not covered by insurance. Parents have reported they spend an average of $500/month on treatments.

These insights emphasize the tremendous financial and emotional support that must be provided to families of children with autism, and opens the door for researchers to further investigate treatments that are viable for scientific study, as well as pursue new lines of study, as in the case of parental depression.

According to Dr. Law, the IAN Project is well positioned to facilitate many of these studies going forward. To date, more than 60 researchers from respected institutions across the country have applied to utilize IAN data, including: National Institute of Mental Health, Harvard Medical School, Yale Medical School and Mt. Sinai School of Medicine.

We are just now beginning to scratch the surface of the complex issues associated with autism. Although we have made some strides, much more work remains to be done. By informing and educating even more families and researchers across the country about the IAN Project, we can continue to organize and mobilize the autism communitys research efforts, said Dr. Gary Goldstein, President and CEO of Kennedy Krieger Institute.


'/>"/>

Contact: Corrie Allen
callen@spectrumscience.com
202-955-6222
Kennedy Krieger Institute
Source:Eurekalert  

Related medicine news :

1. First biomarker discovered that predicts prostate cancer outcome
2. FDA Approves First Anti-Psychotic for Kids
3. Single-incision belly-button surgery to remove kidney performed first at UT Southwestern
4. First study examines newly-licensed RN work attitudes and intentions
5. Glades General Hospital First in Palm Beach County to Provide On-Site Electronic Birth Registration
6. UHW Announces: Antelope Valley Hospital Caregivers and Board Vote to Ratify First Union Contract With SEIU UHW-West
7. Father and Daughter From Tanzania Receive Their First Medical Examination in Newport Beach
8. High and mighty: first common height gene identified by researchers behind obesity gene finding
9. APA Comments on FDAs First Approval of Medication to Treat Pediatric Schizophrenia and Bipolar Disorder
10. TriWest Creates First-of-its-Kind Partnership to Offer Military Leaders With Grief Support Program
11. Watson Receives First FDA Approval for Manufacturing Product at Its Goa, India Facility
Post Your Comments:
*Name:
*Comment:
*Email:
Related Image:
First national autism registry shows notable impact on autism research in opening year
(Date:6/25/2016)... ... 25, 2016 , ... As a lifelong Southern Californian, Dr. Omkar Marathe earned ... the David Geffen School of Medicine at UCLA. He trained in Internal Medicine at ... fellowship in hematology/oncology at the UCLA-Olive View-Cedars Sinai program where he had the opportunity ...
(Date:6/24/2016)... (PRWEB) , ... June 24, 2016 , ... A recent ... that most people are unfamiliar with. The article goes on to state that individuals ... also many of these less common operations such as calf and cheek reduction. The ...
(Date:6/24/2016)... ... June 24, 2016 , ... The Pulmonary Hypertension Association ... it will receive two significant new grants to support its work to advance ... 25th anniversary by recognizing patients, medical professionals and scientists for their work in ...
(Date:6/24/2016)... ... June 24, 2016 , ... Topical BioMedics, Inc, makers of Topricin and MyPainAway Pain ... for a minimum wage raise to $12 an hour by 2020 and then adjusting it ... the lost value of the minimum wage, assure the wage floor does not erode again, ...
(Date:6/24/2016)... , ... June 24, 2016 , ... ... The Grove Investment Group (TGIG), has initiated cultivation and processing operations at its ... Vegas and Pahrump, Nevada. , Puradigm is the manufacturer of a complete system ...
Breaking Medicine News(10 mins):
(Date:6/23/2016)... Research and Markets has announced the addition of ... report to their offering. ... kidney failure, it replaces the function of kidneys by removing ... thus the treatment helps to keep the patient body,s electrolytes ... Increasing number of ESRD patients & substantial healthcare expenditure ...
(Date:6/23/2016)... Research and Markets has announced the addition of ... Forecast to 2022" report to their offering. ... date financial data derived from varied research sources to present ... impact on the market during the next five years, including ... sub markets, regional and country level analysis. The report provides ...
(Date:6/23/2016)... and INDIANAPOLIS , June 23, 2016 ... Lilly Diabetes Tomorrow,s Leaders Scholarship is any indication, the ... announced today online at www.diabetesscholars.org by the ... diabetes stand in the way of academic and community ... Foundation,s scholarship program since 2012, and continues to advocate ...
Breaking Medicine Technology: