Thank you for your interest in participating in one of our RVCL clinical research studies at the Washington University School of Medicine’s RVCL Research Center in St. Louis.

Our team is dedicated to conducting clinical research studies in order to learn more about the cause of RVCL as well as to understand how RVCL affects the brain, vision, and other functions. Our current studies involve an MRI brain scan as well as asking questions to test memory and thinking processes. We need the following participants for our studies:

  • Have been diagnosed with RVCL
  • Related to a family member with RVCL
  • Healthy participants (not related by blood) to serve as controls

Prior to your possible participation, we will explain the studies in depth and answer any questions that you have. After this discussion, you can decide if you are interested in participating.  Once you agree to becoming a participant, the final step is for us to review some of your health information to verify you are eligible.  If you are interested and want to find out more about the possibility of becoming a participant, please complete the secure contact form below, after which our clinical research coordinator or physician will get in touch with you.

Participant Sign Up




With your permission, we will save this information, so we can contact you for any future studies conducted at the RVCL Research Center.  We will keep any information that you give us confidential in a password protected database in a locked office.

Benefits of participation

There are no direct benefits to participants.  Every participant will contribute to the RVCL Research Center’s understanding of RVCL, which may lead to the development of new prevention methods or treatments for RVCL.

Contact us

If you have any questions regarding our RVCL clinical studies, please reach out.

Jennifer Babka, RN

Jennifer Babka, RN

Research Nurse Coordinator, Neurology

Maria Hagan

Maria Hagan

Clinical Research Coordinator, Neurology

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