CCM–CARE Act

Cerebral Cavernous Malformations Clinical Awareness, Research, and Education Act of 2019 or the CCM-CARE Act

This bill requires the National Institutes of Health (NIH) and other agencies to expand and coordinate their efforts to research cerebral cavernous malformation. (Cerebral cavernous malformation is a condition in which blood vessels in the brain and spinal cord become enlarged, which can lead to seizures, paralysis, hearing or vision loss, and bleeding in the brain.)

The NIH must (1) award grants for medical, clinical, and pharmacological research; (2) award grants to support a network of clinical research centers intended to develop a cure for the condition; and (3) convene a Cerebral Cavernous Malformations Research Consortium to develop programs for clinicians, scientists, and patients.

The Centers for Disease Control and Prevention must award grants to research entities for collecting and reporting data about cerebral cavernous malformation.

The Food and Drug Administration must accelerate the clinical trial process for cerebral cavernous malformation by supporting (1) appropriate laboratory indicators of the condition, (2) the qualification of clinical outcome measures related to quality of life, (3) investigational drug applications, and (4) expedited peer-review pathways.