Simons VIP to Simons Searchlight Transition Questions

  1. What is happening?

The Simons Variation in Individuals Project (Simons VIP) is getting a new name and updating its website to improve participant experience, create better data for researchers and help advance our understanding of the rare conditions we study.

  1. Why is it happening?

There are always things we want to improve for participants. In addition to updating our name and website, we’re going to be adding several more languages, allowing us to include even more participants.

  1. What are the next steps?

If you’re already signed up for Simons VIP, you will receive an email from us with a password reset link. This will bring you to the page to sign up on the new website. Once you do, we’ll be able to connect to all the data you have previously given us. We may ask you a few questions to verify your information, but otherwise, you’re all set! Keep participating the way you always have. If you have not yet joined Simons VIP, you’ll register on our new website. You’ll sign a consent form and participate in the same way as all existing participants.

  1. What does it mean for me?

It means a better user experience, an easier sign-up process, more participants with your or your family’s genetic change and more access to research! But you’re still in the same study. It just has a new look.

  1. Will the relationship between my gene group and Simons VIP/Simons Searchlight be affected?

It will not. Because we’re still the same study, you can expect the same relationship between your gene group and Simons Searchlight. We’ll even have some new and refreshed resources for you to share with members of your community, including more information about your gene.

  1. Am I still working with the same team?

Yes! The whole team is still here and ready to help you however we can! You can contact the coordinators through our new email: If you don’t have the new email handy when you need us, our old email address will also still be active, so there are plenty of ways to get in touch with us.

  1. What happens to my personal information?

Your personal information isn’t being shared with anyone new. We’re still the same team, and our new website is being run by a longtime partner that has already been working with the study.

  1. How do I log in?

If you are signing in to Simons Searchlight for the first time, go to the email that we sent with the link to set your new password. The subject was “Important changes to Simons VIP – please read for access instructions” Once you click that link and set your new password, you’ll be logged in. In the future, you can log in by going to

  1. How do I complete surveys?

Once you are logged in to your account, you will see all pending surveys under your “Task List.” If you are the account holder for your children, you will see pending surveys for them under their names and task lists as well. To access the survey, next to the title of the survey, click “Begin Task.”

  1. Do I need to re-register?

No, there is no need to re-register. We’ve moved all of your information over to make the process as simple as possible. All we’re asking you to do is click the link in the email we send you. This will connect the information you have already provided to the information you will enter in the new website.

  1. If I already have a medical history interview call scheduled, do I need to reschedule?

No. Because we’re still the same research project with the same staff members, your participation won’t be interrupted. If you have surveys on your dashboard, you’ll be able to complete them as soon as you set your new password. Any phone interviews you have scheduled will be kept as well.

  1. What if I forgot my email address?

If you have multiple email addresses, be sure to check them all. We sent you an email to the email address you registered with. That message includes instructions and a link to set your new password. If you’re still unsure, you can email and ask a coordinator to check for you.

  1. What will happen shortly before the transition from to

One week prior to launching, we will send a message to all current participants letting them know to stay tuned for a new website coming soon. From then until the launch, they will not be able to log in to their Simons VIP dashboard or complete surveys. If they go to, they will see an “under construction” sign. This delay during the one-week transition period will allow our study team to transfer all the information over to the new system. They will also perform quality assurance checks to make sure the new site is as user-friendly as possible.

  1. When can our family organization update your URL and logo on our site and social media channels?

During our one-week transition period, we will send you the new website URL and logo for your site. Don’t worry if you can’t get everything updated before we launch. Our old URL will redirect to our new URL.

  1. May I get more information from someone?

No problem. You can email us at or give us a call on our toll free number, 855-329-5638, between 8 AM and 4 PM Eastern time to talk directly with a study coordinator.