The Role of Patient Involvement When Developing Therapies

Annemieke Aartsma-Rus, Elizabeth Vroom, Daniel O'Reilly

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

The drug development process is a long and arduous one, especially for rare diseases. Patient and patient representatives can and should be involved in this process from an early stage, since they have the perspective of living with a disease on a daily basis and can best identify which symptoms are the largest burden and which benefits would be more important to them. In this perspective, we outline how patients can be involved optimally in drug development. We outline success factors such as finding the right partners, bilateral education, having realistic expectations, and an open and honest dialog with all stakeholders.

Original languageEnglish (US)
Pages (from-to)118-122
Number of pages5
JournalNucleic Acid Therapeutics
Volume32
Issue number2
DOIs
StatePublished - Apr 2022
Externally publishedYes

Keywords

  • drug development
  • patient advocates
  • rare disease

ASJC Scopus subject areas

  • Biochemistry
  • Molecular Medicine
  • Molecular Biology
  • Genetics
  • Drug Discovery

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