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 

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases