BLEPHAROSPASM APP

HOW WILL INFORMATION ABOUT ME AND MY PARTICIPATION BE KEPT CONFIDENTIAL?
The researchers will do their best to make sure that your private information is kept confidential. Information about you will be handled as confidentially as possible, but participating in research may involve a loss of privacy and the potential for a breach in confidentiality. De-identified study data will be physically and electronically secured on UCLA computer servers. As with any use of electronic means to store data, there is a risk of breach of data security. 

Use of personal information that can identify you:     
Personal information that can identify you will be participant demographics (such as age) and self-motivated video capture of facial muscles during a blepharospasm episode.
The video capture will be transferred from your App to UCLA computer servers to be analyzed. Once this analysis is complete the video will be deleted and only the output data (de-identified numerical data of blink characteristics such as blink rate) will be stored on physically and electronically secured UCLA computer servers.

How information about you will be stored:
De-identified data (participant demographics and numerical blink characteristics) will be stored on physically and electronically secured UCLA computer servers.

People and agencies that will have access to your information:
The research team, authorized UCLA personnel, and the study sponsor, may have access to study data and records to monitor the study.  Research records provided to authorized, non-UCLA personnel will not contain identifiable information about you. Publications and/or presentations that result from this study will not identify you by name.
Employees of the University may have access to identifiable information as part of routine processing of your information, such as for data analysis. However, University employees are bound by strict rules of confidentiality.

How long information from the study will be kept:
We will follow the standards of the University of California Record Retention Schedule and retain de-identified numerical blepharospasm data as well as participant demographics on physically and electronically secured UCLA computer servers for at least three years.