The National Coalition for Cancer Survivorship joined colleagues in the cancer advocacy community in offering advice to the Food and Drug Administration (FDA) regarding the standards for sharing patient-specific clinical trials data with researchers. FDA has proposed that such data be made available to researchers, in hopes that such uses will advance knowledge about drugs, classes of drugs, and fundamental scientific questions. The agency only announced the broad outlines of a data-sharing plan and asked for public input regarding more specific elements of the plan. NCCS and other advocates recommended criteria that would maximize the use of the data and protect patient privacy.
NCCS monitors proposed legislation and regulation and submits comments and recommendations to policymakers on relevant issues to ensure that the voices of survivors, patients, and caregivers are heard in national policy discussions. A full listing of these submitted comments is available in our Policy Comments archive.