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Connecting families with genetic changes to support and research opportunities. Now including single genes related to features of autism and developmental delay.

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Our members get first access to new resources! Register for all the benefits of the Simons VIP Community. You'll be the first to know about all of our resources: colorful, easy-to-follow guidebooks, infographics, and access to many great features.

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Simons VIP research is aimed at better understanding the clinical and behavioral features of people with genetic changes associated with the features of autism spectrum disorder (ASD) and developmental delay.

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The Simons VIP Connect website allows families from around the globe to connect with each other, as well as with experts in the field. Browse our website, or contact us to learn more.

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The Simons VIP Connect website provides a unique way to bring families together. We provide access to experts, the latest resources, and research opportunities.

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We strive to support, educate, and connect families from around the globe. Initially focused on 16p11.2 deletions and duplications, the study has expanded to include many different genetic causes of autism.

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Simons VIP Connect is an evolving initiative, with a long-term goal of engaging families in building communities around research of many genetic causes of autism.

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What is Simons VIP Connect?

The Simons Variation in Individuals Project - Simons VIP - is an online community that supports families with rare genetic changes (also called “genomic variants”) associated with features of autism and developmental delay. We provide access to resources, information, and family support. Simons VIP also provides an opportunity for families to participate in research.


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Which genetic changes do we study?

Researchers are collecting information on a growing number of genetic changes associated with developmental delay and features of autism. We continue to study and support families with 16p11.2 and 1q21.1 genetic changes. In 2014, Simons VIP Connect began to study single genes with a known or suspected association with autism. For a list of genes for which we have one or more families enrolled in our project, click here.

We have study a large and growning number of families with SCN2A, ARID1B, GRIN2B, ADNP, and other genes.

While final determination of eligibility is based on review of lab reports, in general, those who are eligible include:

  • Any person who has had genetic testing that identified a variant in a known autism susceptibility gene or genetic region.
  • Biological parents and siblings are strongly encouraged to participate.
  • International families are welcome, however, participants must be able to read, write, and speak English.

 


What are the different ways I can take part in the Simons VIP Connect community and initiative?

As a visitor: Sit back and browse! You can learn about the genetic changes being studied, research opportunities, and the Simons VIP study goals. Many of our resources are available freely to the public and easy to download.

 

As a Community Member: Registering to become a member of the online community does not automatically enroll you in the research study, but provides you with access to additional information and support resources, including discussion forums, the ability to explore the community, connect with other families, and submit questions to our team of genetics, neurology, psychology, behavior, and other experts.

As a Study Participant: With all the benefits of a Community Member, you will also connect with study coordinators, who have an opportunity to contribute to research about genetic changes. A study coordinator will walk you through the process of consent and building your online account. If eligible, you’ll be asked to complete online research surveys and share some medical information. Still have questions? Call us at 855-329-5638 and ask for a coordinator.

If you choose to register, you can decide to be part of the online community only OR the online community and research study. If you are not interested in research at the time you register, you can join the study at any time in the future by contacting us.


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Contact Us

  • Email: coordinator@simonsvipconnect.org
  • Phone: 855-329-5638
  • Fax: 570-214-7327