 Privacy
Policy
Privacy is important to us. The Fragile X Research Registry adheres
to strict federal, state, and university guidelines to safeguard
individual rights and privacy. All information, including names
and addresses, submitted to the Registry is considered confidential,
and access is restricted to Registry personnel.
Information submitted to the Registry is NOT released to researchers,
other departments, or agencies. Instead, Registry personnel notify
families about new research opportunities, and families may contact
the researcher directly if they choose to participate.
Registry participants are under NO OBLIGATION to participate in
any study.
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