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What are the potential risks to participating in the Cavernous Malformation Registry?
- Cavernous Malformation Registry participation and questionnaires – Reviewing health-related events and completing surveys may cause emotional distress, embarrassment, or discomfort. These risks are anticipated to be minimal. You may decide not to complete a survey at any time.
- Confidentiality of data, including personal information – There is a risk of losing confidentiality. The security and privacy of your personal information is extremely important to us. Reasonable efforts will be made to protect you and your health information to the extent possible. The Alliance to Cure Cavernous Malformation and the company developing the Cavernous Malformation Registry 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.