What makes a new medicine valuable to you- a survey
myaware is pleased to be participating in a study being undertaken by Leuven University, together with Orphanet Inserm US14 (under the sponsorship of Dr. Ségolène Aymé) and King’s College London, to explore how individuals affected by a rare/genetic condition and their caregivers and families define ‘value’ when thinking about new medicines.
What this study is about:
This study aims to: (i) contribute to articulating a clear patient and caregivers voice on the definition of ‘value’ of new medicines specific for rare/genetic conditions, and (ii) feed into the topical policy debate on ways to incorporate patient and caregiver insights into the decision-making process of pharmaceutical regulators.
Outcomes of the study will include:
- generate new insights into patients’ and caregivers’ values and preferences for individuals with rare/genetic conditions, specifically for the UK
- peer-reviewed scientific articles in which all organisations participating will be recognised;
- summary patient-focused brochure describing the study results addressed to patients and their families, which would be made available to organisations who supported the study; and
- discussion of study results at a policy roundtable on patient and caregiver perspectives on new medicines, including organisations who were involved in the study and policy-makers.
Please note that:
- this survey is intended to BOTH individuals affected by a rare/genetic condition and their caregivers living in the United Kingdom;
- 16 patient associations, representing collectively some 80+ rare/genetic diseases, have kindly accepted to partner with us;
- the survey will run from August 1st till October 31st (i.e. 3 months)
The webpage hosting this survey is:
It will take around 20 minutes to complete
FOR FURTHER INFORMATION ON THIS PRESS RELEASE PLEASE CALL
MARK THOMAS AT WORD ASSOCIATION ON: 01455 614333