23rd Workshop, Barcelona: “Patient Relevant Outcome Measures & Patient Reported Outcomes”

23rd Workshop of the EURORDIS Round Table of Companies

“Patient Relevant Outcome Measures & Patient Reported Outcomes”

September 29th, 2015

Barcelona, Spain

Discussion around a table at event

This workshop served as a forum for discussion between all stakeholders present with the aim of reaching a common understanding of Patient Relevant Outcome Measures & Patient Reported Outcomes. It is aligned with IRDiRC, which has issued recommendations highlighting the importance of PROMs and PROs.

Making clinical studies more patient-centred means that they are designed to be as relevant as possible to patients and therefore the most efficient at generating evidence to prove that a therapy will improve lives. PROs involve the collection of data provided directly by patients regarding their health condition. This data, collected, for example, by interview, is qualitative rather than quantitative. Workshop participants discussed the challenges around PROs and PROMs, including: the cost of collecting qualitative data from patients; the issue that qualitative data expressed by patients can be subjective and more difficult to measure than quantitative data; and the fact that because rare disease populations are very small there are fewer patients who can participate in the development of PROs/ PROMs.

 

Participants: 95

Agenda 

Concept Paper 

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases