What will happen in the study?
In this research study, your medical records will be reviewed and data will be collected. There are no additional procedures or visits.
Data collected will include but not be limited to the following:
- Age at the time of your HHT diagnosis
- Genetic test results
- Family history
- Lab values
- Other information associated with your HHT
What are the bad things that can happen from this research?
There is a small risk that your protected health information may be released to an unauthorized person. However, we will be very careful with this information and use unique study ID numbers to prevent this.
There may be other risks that we do not know about yet.