Understanding Your Participation
Individuals eligible to join the Simons VIP Connect include those with a Copy Number Variation (CNV) deletion or duplication identified by chromosome microarray testing and their families. To begin the registration process, please review the information below and create your account. After your account has been created, you must log into your account to complete the profile questionnaire. If you are registering for multiple members of one household, you will create a single family account and register the first individual. You will then be able to add other family members.
Understanding your Participation in Simons VIP Connect
The purpose of the your profile in Simons VIP Connect is to allow families to contact each other, provide support and learn more about individuals with CNVs. Simons VIP Connect will also assist clinicians and researchers in contacting families about research studies they may want to learn more about or 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 that may be associated with autism or developmental delay. Parents and guardians of persons with a CNV 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 community.
Will I need to provide Simons VIP Connect with additional information?
It is important to have the most current information in the database. Therefore, from time to time, we will ask you to update your family’s profile.
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. Should new knowledge become available that may affect you and your family, Simons VIP Connect, based on the information you placed in your profile, will then put you in contact with the investigators responsible for the proposed research study/clinical trial. 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 to answer any questions about the 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. Simons VIP Connect will not perform research with the collected data.
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 individual’s identities and privacy is 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, 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 CNV deletion or duplication fill out the registration and answer the questions.