How do I share my medical records?

There are 2 options to share your medical records. You can share your medical record in one or both ways. Sharing medical records is voluntary.

1. Upload PDFs. You can upload PDFs (or scans) of any medical records, such as clinical notes, imaging, genetic results, and/or testing reports. Records are stored in a secure database and will be available anytime by logging into your Cavernous Malformation Registry profile.
2. If you are in the United States, you may be able to link your electronic health records via application programming interfaces (APIs). You may be able to connect your online portal from your care provider or other repository of electronic health information to the Registry.

Types of information that will be examined in your medical records include but are not limited to patient identifiers, demographics, diagnoses, medications, procedures, outpatient and in-patient visits, laboratory results, vital signs, and doctor notes.

The Cavernous Malformation Registry will provide helpful instructions to upload and/or link your records.  The Registry will host instructional teleconference meetings to help upload and/or link records