Understanding Registration


Understanding your Participation in Simons VIP Connect

The purpose of completing the “My Profile” in Simons VIP Connect is to allow families to contact each other, provide support and learn more about individuals with CNVs and other genetic changes. Simons VIP Connect will also assist clinicians and researchers in contacting families who are interested in research about studies that they may want to learn more about or that they may consider joining.

How will creating A Simons VIP Connect profile affect me or my child?

This community has been created specifically for individuals with CNVs and other genetic changes that may be associated with autism spectrum disorder or developmental delay. Parents and guardians of persons with a CNV/genetic change may register for their child. After registering and creating a profile, you will be contacted periodically with information about activities and resources. You will also be able to use Simons VIP Connect to communicate with other members of the online community.

Will I need to provide Simons VIP Connect with additional information?

It is important to have the most current contact information in the database. Therefore, from time to time, we will ask you to update your family's profile or to notify the coordinator if there are any changes that need to be made.

How is my/my child's privacy protected?

All of the information you provide to Simons VIP Connect will be maintained in a secure database, and any information that could identify you and your family members will not be shared without your approval.

If you indicate that you are interested in research, should any research studies become available for which you/your families may be eligible, Simons VIP Connect will provide you with the contact information for the investigators responsible for the research study/clinical trial, based on the information in your profile.
You can then decide if you want to learn more. The investigator(s) responsible for the research study/clinical trial will determine if you or your child is eligible to participate and is responsible for answering any questions about their research study/clinical trial.

Simons VIP Connect is deeply committed to issues of privacy and identity, and will continue to take every available measure to ensure the security of your personal information.

What happens to the information I put in my/ my child's profile, and who has access to it?

The goal of this community is to make the information you provide searchable, while protecting your privacy. Only de-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to the Simons VIP Connect community of registered patients, family, friends, caregivers, and medical researchers.

If you choose to allow other families to contact you, members will be able to see your username, and location and the genetic change, gender and age of your child. Other members will not have direct access to your personal contact information.

The de-identified data collected and compiled by this registry belongs to the Simons VIP Connect community. The Simons Foundation is the guardian of the community information and will ensure that individuals’ identities and privacy are protected. Simons VIP Connect will perform the searches for specific questions within the registry and provide reports back to you and the medical research community.

What if I register myself/my child in more than one registry/database?

It is all right if you participate in more than one community / registry. The goal of Simons VIP Connect is to coordinate activities with other registries where possible. Simons VIP Connect will put in place checks and safeguards to help identify duplication of registrants and to coordinate with other registries. You and your child's personal identification that you have provided to Simons VIP Connect will always remain protected.

At any time, you reserve the right to withdraw your information from the Simons VIP Connect community. Simply contact the Simons VIP Connect Coordinator (This email address is being protected from spambots. You need JavaScript enabled to view it. or 855-329-5638), and your profile will be removed.

As a parent/guardian, how deeply should I involve my child in the registration process?

We believe that it is important for all the people participating in this community to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we recommend that you talk with your child and obtain his/her cooperation to participate in this registry. We recommend that any individual over the age of 18 register for himself or herself, unless the parent or guardian maintains legal guardianship. It is fine to assist an adult with a genetic change to fill out the registration and answer the questions.


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