NCHR Testimony at FDA Meeting about Duchenne Muscular Dystrophy Clinical Trial

May 18, 2017. Patients with Duchenne muscular dystrophy and their loved ones deserve the benefits of the most rigorous research available. At the same time, investing in a clinical trial requires significant time and effort, and patients ALWAYS face risks without any guarantee of benefits. Patients and families who are willing to participate in a clinical trial that has the potential to benefit many should be fully informed about the potential risks and benefits of their participation in order to make a decision that is best for them.

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NCHR Comment on the USPSTF’s Draft Recommendations for BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing

April 12, 2017. We support the USPSTF’s efforts to provide updated recommendations on risk assessment, genetic counseling, and genetic testing on BRCA-related cancer, based on quality, up-to-date scientific studies. We hope the review will quantify the benefits and harms of each step starting with screening, in order to help USPSTF to make meaningful recommendations for appropriate subpopulations of women.

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