A bill to increase research, education, and treatment for cerebral cavernous malformations.

Introduced in Senate
Cerebral Cavernous Malformations Clinical Awareness, Research, and Education Act
of 2017 or the CCM-CARE Act

This bill amends the Public Health Service Act to require the National
Institutes of Health (NIH) to strengthen and coordinate its efforts concerning
cerebral cavernous malformation (CCM). (CCM 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, or bleeding in the brain.) The NIH
may award grants and enter into cooperative agreements for CCM research.

The NIH must: (1) award grants and contracts to plan and provide support for a
network of CCM Clinical Research Centers; (2) identify and support additional
centers to facilitate medical research to develop a cure for CCM and enhance
medical care for CCM; and (3) convene a Cerebral Cavernous Malformations
Research Consortium to develop programs for clinicians, scientists, and

The Centers for Disease Control and Prevention may award grants and enter into
cooperative agreements for the collection, analysis, and reporting of data on

The Department of Health and Human Services must award grants and enter into
cooperative agreements for epidemiological activities related to CCM and must
provide for a national CCM surveillance program.

The Food and Drug Administration must, in order to hasten clinical trials for
CCM, coordinate with clinical centers, investigators, and advocates to support:
(1) qualification of biomarkers, (2) qualification of patient reported outcome
measures for quality of life, (3) investigational new drug applications, and (4)
adaptive trial designs for rare disease research and expedited review of



  • Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

    Feb 28th, 2017
  • Introduced in Senate

    Feb 28th, 2017