Introduction to a Supplement on Innovative Approaches to Studying Health Outcomes in Rare Diseases

Kesselheim AS, Gagne JJ - Journal of General Internal Medicine

  • Regulation and Clinical Evidence

Summary:

The authors introduce a journal supplement highlighting the growing importance of rare diseases in health policy and the need for innovative research methods, noting that rare disease drugs are increasingly approved on weaker evidence and that novel approaches to trial design, patient registries, and outcome measurement are needed.

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Recent Work from PORTAL

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How Congress Can Fix Expert Advisory Committees

Daval CJR, Kesselheim AS - STAT

  • Regulation and Clinical Evidence
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International Regulatory Status and Reimbursement Recommendations of Haematological Malignancy Drugs Withdrawn from the FDA Accelerated Approval Pathway

Mulsant SS, Kesselheim AS, Naci H - Journal of Cancer Policy

  • Price, Value, and Access
  • Regulation and Clinical Evidence
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Comments on FDA Discussion Paper, “Considerations for the Regulation of Generative AI-Enabled Medical Devices”

Jaiswal N, Gorijavolu R, Thomas S, Hwang TJ, Celi LA, Kesselheim AS - Food and Drug Administration (FDA)

  • Regulation and Clinical Evidence