Results from the Rare Barometer Voices survey on Patients’ Participation in Research

Results from the Rare Barometer Voices survey on “Patients’ Participation in Research” have been published!

Survey participants of Rare Barometer Voices are a community of people living with a rare disease who participate in EURORDIS-Rare Diseases Europe surveys and studies.

This survey aimed to assess rare disease patients’ level of participation in rare disease research and their experiences as well as to determine what patients feel to be the current obstacles to rare disease research and its priorities.

This survey was completed by 3213 people with a rare disease from 63 countries. The main findings were:

  • More than 1/3 (37%) of rare disease patients surveyed declared that they had already participated in a research study.
  • Among those who had participated, 18% specified that they had participated in research to develop treatments and therapies.
  • More men (21%) than woman (16%) have participated in research to develop treatments.
  • Rare disease patients give the fact that they want to help science and the community as their main motivation for participating in research.
  • Among rare disease research areas, therapeutic research is considered as the highest priority among rare disease patients.
  • Lack of public funding is identified as the main obstacle to rare disease research.

Read the full survey results report here

If you are a rare disease patient and wish to take part in their current survey, “Sharing my health information: why, how, and with whom?”, click here

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