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BATTEN CONTACT REGISTRY FOR FAMILIES - Keep in touch with upcoming Batten research and trials

19 August 2021

BATTEN CONTACT REGISTRY FOR FAMILIES – Keep in touch with upcoming Batten research and trials
The University of Rochester Batten Center (URBC) is a comprehensive Batten disease clinical and research center at the University of Rochester Medical Center in Rochester, New York. The URBC provides support and clinical services, contributes new knowledge, and works to find treatments that will slow, halt, or prevent disease in persons with Batten Disease.
If you are interested in learning more about the URBC, would like to be informed about future research and you are a parent or legal guardian of someone with Batten disease, you may sign up to be on their contact registry/database.
People included in the registry will be contacted when a new study starts to see if they might be interested in participating (please note: being included in the database does not mean that you will be enrolled in any future studies. Rather, you are only agreeing to be contacted about future research studies.)
To be included on the registry, click on the link below and complete the ‘URBC Contact Registry’ online form.