Results of health technology assessments of orphan drugs in Germany—lack of added benefit, evidence gaps, and persisting unmet medical needs
2024

Assessment of Orphan Drugs in Germany

Sample size: 89 publication Evidence: low

Author Information

Author(s): Philip Kranz, Natalie McGauran, Can Ünal, Thomas Kaiser

Primary Institution: Institute for Quality and Efficiency in Health Care (IQWiG), Cologne, Germany

Hypothesis

Has the increase in orphan drug approvals led to improvements in patient-relevant outcomes in Germany?

Conclusion

Many orphan drugs approved in the EU lack proof of added benefit in improving patient-relevant outcomes due to evidence gaps.

Supporting Evidence

  • Eighty-nine orphan drugs were evaluated in 175 research questions.
  • In regular HTAs, no proof of added benefit was shown in fifty-four percent of the questions.
  • Established treatments were available for fifty-eight percent of the questions analyzed.

Takeaway

This study looked at orphan drugs in Germany and found that many of them don't actually help patients as much as we thought.

Methodology

The study analyzed health technology assessments of orphan drugs in Germany from January 2011 to December 2023.

Potential Biases

Potential bias due to the lack of standard care comparisons in limited assessments.

Limitations

The study may not fully capture all orphan drugs or their effects due to the limited assessments and lack of comparative data.

Participant Demographics

Orphan drugs evaluated were for various rare diseases, but specific demographics were not detailed.

Digital Object Identifier (DOI)

10.1017/S026646232400062X

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