NATURAL HISTORY STUDY

Research Opportunity - Simons Searchlight OCNDS Natural History Study

Have you ever wondered:

"What happens in adulthood for those living with OCNDS?"
“How many individuals with OCNDS have autism or autism behavior traits?”
“What is the average age that someone with OCNDS speaks?"
"How many individuals with OCNDS have epilepsy?"
"What do they do to manage their epilepsy?"

These are great questions which can't be answered unless individuals and their families participate in the OCNDS/CSNK2A1 natural history study. Knowledge is power! OCNDS families can make a difference today by signing up for the CSNK2A1 Simons Searchlight Natural History Study! On Sunday, March 14, 2021, we had a Question & Answer session with CSNK2A1 Foundation and Simons Searchlight about our natural history study. Here is the video from the Q&A. To learn more visit www.simonssearchlight.org

Are you interested in participating and would like to speak with an OCNDS parent on the Parent Advisory Board who is participating in the natural history study? If so, email us at info@csnk2a1foundation.org and we will facilitate the call.

Read about 3 different OCNDS families and why they are participating in the Simons Searchlight Study:

Jules’ Story
Kirsty’s Story
Harper’s Story

REGISTRY REPORTS

Download quarterly reports here. The goal of these reports is to share up-to-date data contributed by families.

CSNK2A1 Quarter 1 Report 2021
CSNK2A1 Quarter 2 Report 2021
CSNK2A1 Quarter 3 Report 2021

Simons Searchlight is an initiative of the Simons Foundation Autism Research Initiative (SFARI) that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).

Visit Simons Searchlight to join an online support community that links families with genetic changes to each other and to research opportunities. Currently, Simons Searchlight collects family, medical, developmental and behavioral information through online surveys and phone interviews with families and individuals.

We highly encourage our community to register with Simons Searchlight to participate in the Simons Searchlight long-term natural history study. By participating in the Simons Searchlight study, we can improve our community’s understanding of OCNDS.

If you have any questions and would like to talk with a member of our community who is participating in the SIMONS Searchlight, please contact us and we will put you in contact with a community member to talk with about their experience.

 

“I have had great interactions with my Simons Searchlight coordinator. Simons Searchlight makes it easy for us to participate in the research program benefiting those with OCNDS because they are able to accommodate and work around our crazy life schedule.”  R. Cramer, mom of 4 year child with OCNDS

 

 

Dr Wendy Chung explains,
"You must represent yourself in these studies."

Watch this video and learn why.

Watch this video to learn how to complete your Simons Searchlight account.

Families partnering with scientists.
Start your journey today! Learn more.

GET REWARDED!

As a way to reward you for your time, when you complete tasks for Simons Searchlight, you will receive Amazon gift cards. Any gift cards you earn can be redeemed through the Rewards feature on your Simons Searchlight account dashboard. Watch the video below to learn about Simons Searchlight and how to redeem the gift cards.

 

Simons Searchlight Infographic

By participating in the Simons Searchlight study, we can improve our community’s understanding of OCNDS.

FAQS

What is Okur-Chung Neurodevelopmental Syndrome? What are the symptoms of OCNDS? Learn more!

REGISTER

Registering with CSNK2A1 Foundation will help to keep you up-to-date on the latest information regarding OCNDS.

DONATE

Help us find a cure and make a meaningful change in the lives of individuals affected by OCNDS. Donate today!

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