CCM3 Care and Clinical Research Center

Frequently Asked Questions

What is it?

CCM3 Action has established a Consultation and Clinical Research Center at the University of Chicago under the direction of Dr. Issam Awad just for people who have the CCM3 mutation that causes cerebral cavernous angiomas (cavernous malformations). This Center is a place where patients can be examined so that they:

1) Can be assured that their medical records will have one comprehensive evaluation performed by a team that is familiar with the mutation.

2) Can help in the efforts to understand this illness.

Why is it needed?

1) CCM3 is both an extremely rare and a more serious mutation than the other mutations that cause cerebral cavernous angiomas. As of this writing, we know of only 30 people who have been identified with the CCM3 mutation in the United States. It also appears that the CCM3 mutation may cause problems in other body systems or may contribute to other illnesses.

2) Some people with the CCM3 mutation have been receiving treatment in facilities that aren’t as familiar with the illness. The CCM3 Center will provide a way for everyone to receive the same level of evaluation by experts to be sure they are receiving the most informed care. The CCM3 Center is designed to be a supplement to your current care providers. The team at the CCM3 Center will write a summary report that will be sent to your doctors at home.

3) Even if you have received expert care at your home medical facility, your information is critical for developing an understanding of the illness. We need to document and compile all symptoms in a consistent way to see if something falls together that will point research in the right direction. Even if you choose not to visit the CCM3 Center, we ask that you consider enrolling in the Angioma Alliance DNA/Tissue Bank and Clinical Database so that we may receive your medical records and imaging. For more information about this program, please visit www.angioma.org/DNA.

What will it cost me?

If your medical insurance covers part or all of the cost of an evaluation, we ask that you use this when visiting the CCM3 Center. Angioma Alliance will provide travel assistance and help with co-pays if needed. For those without medical insurance, we will provide travel assistance and work with you and the University of Chicago to develop an evaluation plan that will provide the most extensive evaluation with the funds available.

Resources

Visit the National Center for Medical Home Implementation to learn how to create a Care Notebook to keep records of medical treatments.

Cavernous Angioma and Children

How does it work?

1) First, contact Angioma Alliance by emailing clee@ccm3.org or amy.akers@angioma.org.

2) We will email you to set up a time to talk to explain the CCM3 Center in more detail. We will also ask that you consider enrolling in the Angioma Alliance DNA/Tissue Bank and Clinical Database so that we can receive your evaluation. This is not mandatory for participating in the CCM3 Center, but it would make your visit the most useful in terms of furthering research. In either case, we will ask you for a list of your current doctors.

3) We will send you releases to sign allowing your doctors to release your medical records.

4) The team at the University of Chicago will review your records and decide which specialists should be involved in your evaluation. We will email or call you when it is time to set up an appointment for your visit.

5) If you cannot afford the travel expense, we will make your travel reservations because we will be using Ronald McDonald House for families, graduate student housing for adults, and we may be using an organization like AngelFlight for flights. These details will be worked out on a case-by-case basis.

6) Your appointments with specialists will be scheduled as close in time as possible. If an MRI is needed, you will have it at the University before your other appointments. MRIs and your appointment with Dr. Awad will be on Mondays.

7) The doctors at the University will evaluate you and send a summary report to your doctors, to you, and to the DNA/Tissue Bank if you give them permission.

8) Once you have paid what you can of your medical bills for this visit, please forward the remaining bills to us. We ask that you please try to pay as much as you can – our funds are limited, and we need to try to have every person with the CCM3 mutation seen.

9) You may continue to see doctors at the University of Chicago, if you choose, for your ongoing care, but this will then become your financial responsibility.