What are the potential risks to participating in the DFR?
- DFR participation and questionnaires – Information you choose to share on the DFR forums may allow another participant to identify you. Information shared by other participants in the forum may make you uncomfortable. Additionally, it is possible that reviewing health related events and completing surveys may cause emotional distress, embarrassment, or discomfort. These risks are anticipated to be minimal. You may decide to not complete a survey at any time.
- Confidentiality of data, including personal information – There is a risk of loss of confidentiality. The security and privacy of your personal information and data is an important concern for us. Reasonable efforts will be made to protect you and your health information to the extent possible. The DDX3X Foundation and the company developing the DFR website and computer systems will take reasonable technical precautions to keep your data secure. Absolute confidentiality cannot be guaranteed.
- Unforeseeable/unknown risks – There may be risks that are unknown at this time. You will be notified of any significant new findings that become known that may affect your willingness to continue in the study.