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IAN LAUNCHES VACCINE QUESTIONNAIRE

Date First Published: January 14, 2009
Date Last Updated: January 6, 2011

The Vaccine Questionnaire is now closed. Our thanks to those who participated! 

The Interactive Autism Network (IAN), the nation's largest online autism research project, is launching its Vaccine Questionnaire. The thousands of families participating in the IAN Research project will have an opportunity to share their beliefs and practices with regard to vaccinations. Have families with a child on the autism spectrum vaccinated subsequent children? Have they skipped or delayed some or all vaccines? What are their beliefs regarding any possible link between vaccinations and autism?

The Vaccine Controversy

One of the most controversial issues in autism is the notion that there may be some association between a vaccine, or series of vaccines, and the onset of an autism spectrum disorder (ASD). At one time, the focus was on the measles-mumps-rubella (MMR) vaccine. Later, attention shifted to the presence of thimerosal, a mercury-based preservative, which was used in many childhood vaccines. (It has since been removed from nearly all.) Population-based studies investigating both hypotheses have failed to show a link.

Nevertheless, the personal narratives of some families of children on the autism spectrum continue to include a description of a child's deterioration into autism following his or her shots. Social movements have formed around this belief, and there are some who challenge the evidence of no connection presented by major national health and science organizations. They continue to raise old questions, as well as new ones. Some have stressed, for example, that the overall number of vaccines given to young children has greatly increased and have proposed that this could be harmful for certain vulnerable individuals. The evidence so far does not support some global link between vaccinations and all cases of autism, but the notion that a subset of autism cases may be linked to a vaccine-related vulnerability remains.

Working to resolve the issue is critical. If children, or some specific subset of children, may be susceptible to harm due to a specific vaccination, series of vaccinations, or vaccine component, it is important to know this in order to protect future children. Identifying a specific vulnerability would be especially crucial, protecting those who are vulnerable and freeing those who are not to receive vaccinations essential to personal and public health.

Of course, if there is no connection between autism and vaccines whatsoever, it is just as critical to know this. Fear about a possible link is driving down vaccination rates and creating the potential for disease outbreaks. Time, energy, and resources are being poured into the debate while other potentially fruitful autism research topics go unexplored.

Some firmly believe that the vaccine-autism question has been examined far beyond necessity, and that all further effort in this direction is a waste of time and money. Others firmly believe that there is a connection, and that not nearly enough has been done.

Our job at IAN is not to resolve this debate, but to collect the data that will permit researchers to examine these questions in ways they have not been able to examine them in the past.

The Vaccine Questionnaire

The IAN Vaccine Questionnaire, an online survey, is collecting information on vaccine-related beliefs and practices from the thousands of families of children on the autism spectrum participating in IAN Research. All IAN Research families are being asked to complete the new questionnaire for each of their children, both affected and unaffected, ages 4 through 17. (Children younger than 4 have not yet passed through the principal vaccination period and so will not be included at this time.)

The information collected will provide researchers with an opportunity to study both what families believe and what decisions they are making based on those beliefs. How many families are convinced there is a connection between autism and vaccinations, and how many do not believe that at all? How many families skip vaccines, delay vaccines, or modify vaccine schedules, especially for the younger siblings of their child with autism? How many get all shots on time?

The information collected will permit researchers to explore some essential questions.

According to Dr. Carole Samango-Sprouse, director of the Neurodevelopmental Diagnostic Center for Young Children and an associate clinical professor of pediatrics at George Washington University, who worked with the IAN team to develop the Vaccine Questionnaire, exactly what those questions are will depend on what the data from IAN families show. Dr. Samango-Sprouse's earlier pilot study, funded in part by SafeMinds, found that it was common for parents of children with ASD to avoid vaccinating siblings in the first five years of life. The number of families involved in the study was small, however. Now, with the involvement of IAN, thousands of families can be asked similar questions.

Based on what is learned from families' responses, researchers will be able to plan and conduct additional vaccine-focused studies.

They also will be able to recruit for such studies based on the information IAN families submit. More than 140 autism studies have recruited participants with the assistance of the IAN Project. The Vaccine Questionnaire will make it possible for researchers interested in vaccine-related questions in autism to recruit families for their studies through IAN as well.

Complete Your Vaccine Questionnaire Today!

The IAN Vaccine Questionnaire represents an extraordinary opportunity for families to take part in a nationwide survey on vaccine-related beliefs and practices, with great potential to advance our knowledge. This is a vital step toward addressing the many questions at the heart of the vaccine-autism controversy.

We hope all current IAN families will complete the Vaccine Questionnaire for each of their children, ages 4 through 17. (The questionnaire should already appear in your family profile, under each child's separate section.)

If you are not yet registered to participate in IAN Research, we would love to have you take part. Visit IAN Research to learn more about the project and to register.

If you have questions, you can reach the IAN team at researchteam@kennedykrieger.org or (866) 348-3440. We are here to help.

The Vaccine Questionnaire is now closed. Our thanks to those who participated! To view results, visit the IAN Data Explorer and choose Vaccine Questionnaire from the dropdown menu.

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