Prioritization of research engaged with rare disease stakeholders: a systematic review and thematic analysis.

ABSTRACT:

Background

Although rare diseases (RD) are increasingly becoming a priority for healthcare activities and services around the world, developing research policy for investigating RD in public settings proves challenging due to the limited nature of existing evidence. Rare conditions require the involvement of a wide range of stakeholders in order to promote general awareness and garner political support. Consequently, it is critically important to identify trends in the various types of research focusing on rare disease stakeholders, including the specific topics or issues to be included in surveys and studies focused on RD stakeholders. This systematic review and thematic analysis analyses the existing literature based on RD surveys, including the stakeholders involved, and propose

SUBMITTER: Yoon S 

PROVIDER: S-EPMC10668415 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature