The ELSI node is a partnership between Manchester, Oxford and Cardiff, committed to addressing important issues such as:
1. Consent to testing and taking part in clinical trials.
2. Living with an undiagnosed rare condition.
3. Understanding the psychological and social impact of rare conditions.
Within each of the three sub-projects, there is a specific role for patients, families and support groups, who will be involved the node’s research and engagement plans as active participants since those affected by rare conditions should have a say in decisions about the research that may affect them.
The node will also collaborate with scientists, clinicians, charities, patients and communities, enabling closer integration of national ELSI expertise and work as an integrated system to deliver innovations that serve the needs of the Rare Disease Research Platform, across all rare conditions and all life stages.
