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Read about Simons Searchlight’s commitment to data privacy and security.

DATA

Simons Searchlight’s Commitment to Data Privacy and Security

You may have read recent news reports about the potential establishment of a national autism registry by the National Institutes of Health, which have raised understandable concerns about data privacy for people and families participating in autism research. While the Department of Health and Human Services has most recently announced they will not form a registry, we want to address any questions you may have about data security and privacy here at Simons Searchlight.

Your privacy is extremely important to us. Simons Searchlight adheres to the highest standards of research ethics to protect your privacy and the security of your data.

It is important to know that Simons Searchlight is a privately funded (non-governmental) research study — and is not required to share its data with anyone, including the government.

Simons Searchlight receives no money from the government and it never has. All our costs are covered by grants from two private foundations, the Simons Foundation and Simons Foundation International.

Simons Searchlight’s research methods must be reviewed and approved by an Institutional Review Board to ensure that important protections are in place to safeguard participants during research and to later protect the data you share. These protections include never disclosing the identities of those participating in Simons Searchlight to any third party, including the United States government, without explicit consent.

Importantly, any information that might identify a participant personally is removed from our collected data before it is shared with researchers who apply to us for its use. This means your data are anonymized and cannot be connected to you.

We screen all researchers who request use of Simons Searchlight data and carefully review how they will use the data before we approve their requests. Researchers who use Simons Searchlight data must agree that they will not use the data to try to identify any individual participants.

Finally, Simons Searchlight and the Simons Foundation each hold a Certificate of Confidentiality which legally protects individuals in the Simons Searchlight study from having their identifying data disclosed.

We understand that recent reporting about autism research may make some participants wonder about the risk of sharing personal and family data, but nothing has changed for Simons Searchlight. We will continue to uphold the most rigorous privacy practices.

Please don’t hesitate to reach out to us with any questions or concerns. We can be reached at Coordinator@SimonsSearchlight.org.

We are very grateful for your participation in Simons Searchlight and for your contributions to advancing research on rare genetic neurodevelopmental disorders.

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