Is it safe?
The registry is voluntary and secure. In keeping with HIPAA(Health Information Portability and Accountability Act) privacy guidelines, information that may allow viewers of the data to identify an individual is accessible only on a need to know basis by the administrators of the registry.
Families can submit as much data as they are comfortable submitting. At a minimum we ask for a name, type of Usher, and a means of contacting you.
Who administers the registry?
The Usher Syndrome Registry is administered by the Usher Syndrome Coalition. The Coalition is a 501(c)3 not for profit organization dedicated to supporting Usher syndrome research by engaging families in the process.
Who ‘owns’ the data?
The Usher Syndrome Coalition is a family focused organization. Usher families determine access to the data so Usher families ultimately ‘own’ the data.
What entities would have access to this data?
Any legitimate researcher or support organization with a legitimate need can have access to data scrubbed of personal identification information. All data sharing meets HIPAA guidelines for confidentiality.
How do researchers request access to the data?
Researchers must submit a request for data to the Usher Syndrome Coalition. An Institutional Review Board (IRB) made up of well respected, experienced Usher researchers as well as Usher families scrutinize the purpose and the value of the request before determining access.
Can researchers contact registrants about clinical trials?
Researchers are never given demographic or personally identifiable information on registrants. In keeping with HIPAA requirements, only registry administrators may contact individuals that register. Researchers may submit a one page document describing the trial and the participation requirements. If approved by the IRB, administrators pull the appropriate list and the administrators, not the researchers, send the families information about the trial along with the contact information for the researcher. It is then up to the family to determine if they want to contact the researcher or not.