The National Organization for Rare Disorders submitted comments to the Institute for Clinical and Economic Review (ICER) in response to their call for comments on how to improve their value framework development process. You can find NORD’s comments here.
People with rare diseases have a uniquely important role to play in value framework development. Almost every input into a value framework involves the personal experiences of people with rare diseases and their families. With patient-centricity fueling innovations in rare disease research and drug development, it is critical that any and all value frameworks place the patient at the center of its creation. It is for these reasons that we are pleased to provide comments on ICER’s “Proposed Improvements to its Value Assessment Framework”.
From the ICER website: ICER is a trusted non-profit organization that evaluates evidence on the value of medical tests, treatments and delivery system innovations and moves that evidence into action to improve the health care system. To accomplish this goal ICER performs analyses on effectiveness and costs; develops reports using innovative methods that make it easier to translate evidence into decisions; and, most distinctively, fills a critical gap by creating sustainable initiatives with all health care stakeholders that can align efforts to use evidence to drive improvements in both practice and policy. Through all its work, ICER seeks to play a pivotal role in creating a future in which collaborative efforts to move evidence into action provide a foundation for a more effective, efficient, and just health care system.
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