Dr. Law's Letter to Researchers
Dear Colleagues,
It is my pleasure to welcome you to the Interactive Autism Network (IAN) – an innovative online project designed to facilitate and accelerate autism research.
The Interactive Autism Network has three specific aims:
- To generate and maintain an extensive online research data set on children with Autism Spectrum Disorders (ASDs), which will be made available to all autism researchers.
- To serve as an online research registry, which will help IRB-approved autism-focused research projects in their efforts to recruit study participants.
- To host an autism research-focused website and community, which will link autism researchers to each other and to families.
Our goal is to help your research projects succeed, thereby bringing hope to the millions of families impacted by ASDs. I invite you to join us and to take advantage of the tremendous opportunities IAN can provide.
IAN Research Data Set
IAN collects data in a secure online environment from the parents of children with an ASD. Parents fill in a series of online questionnaires from home or from any computer. This online design eliminates many obstacles to participation parents face in more traditional research projects. They don’t need to travel to a distant clinic or take time off of work. They can answer questions at their convenience, taking breaks as needed. Because this research project is so accessible, we anticipate the participation of thousands of families.
IAN is a longitudinal research project. We ask parents to fill in a series of baseline questionnaires about themselves and their affected and unaffected children. Periodically, we ask them to respond to questions for reassessment and exploration of new subject matter. Among the questionnaires that we administer longitudinally is the Social Communication Questionnaire (SCQ), which is an instrument that measures the core symptoms of autism. In addition, original IAN research questions cover a variety of subjects including diagnosis, cost, co-morbidity, and family history. Of particular interest, considering the dearth of information on interventions being received by children with ASDs, are our questions on Treatments and Outcomes.
For more detailed information about our data set, please view our questionnaires.
Data gathered by IAN is not proprietary; we will make de-identified data available for use by the autism research community.
To apply to use the IAN Research Data Set, go here.
IAN Research Registry
IAN will not only provide researchers with an important data set. It will also serve as a research registry. This registry will match researchers who are undertaking their own autism-focused studies with families who meet the criteria for inclusion in those studies. We hope that use of the IAN Research Registry will reduce the cost and time required to locate willing and qualified research participants. We also hope to facilitate an increase in sample sizes, to the benefit of all.
To apply to use the IAN Research Registry, go here.
IAN staff will contact families for you by e-mail. (This protects a family’s privacy and ensures that they are solicited only for projects for which they pre-qualify.) Once a family contacts you about your specific project, IAN Research will not be involved except to ask you and the family if they did indeed enroll in the study.
IAN Research Design
IAN is an Internet mediated research project. To find out more, please read:
Internet Mediated Research and Autism: Why Its Time Has Come.
IAN Community
The IAN Community website will provide you with the opportunity to cross two divides: the one that keeps you from communicating easily with the diverse range of autism researchers throughout the world, and the one that separates you from the people most affected by your work—individuals with ASDs, their families, teachers, physicians, and other supporters.
The general Community website is a place researchers can share their findings with the autism community. By submitting articles or taking part in a related discussion, you will have the opportunity to explain and contextualize your work, answer questions, and respond to feedback.
A “researchers only” area will soon provide a space for sharing ideas, collaborating on projects, and brainstorming through virtual meeting rooms and researcher-only discussions. Eventually, we will provide an international researcher-maintained directory of institutions, researchers, and projects. Our objective is to foster the cross-pollination of ideas and the birth of new collaborations – much as might happen at an international research conference, but taking place 365 days a year.
Please Join Us
A friend of mine once said that we are measured in life by the problems that we choose to tackle. For those of you who have chosen to tackle autism, I have the greatest respect and admiration. It is my hope that IAN will help you in your courageous undertaking.
Our success at IAN will truly be measured by the engagement of researchers, and the new discoveries and treatments you generate. I am here to answer your questions, respond to your feedback, and facilitate your research in every way possible. I invite you to contact me at researchteam@IANproject.org.
Sincerely,
Paul Law, MD, MPH
Director, Interactive Autism Network
Kennedy Krieger Institute
Baltimore, Maryland, United States
