The Rare Disease Patient and Ethics Council (RD-PEC) examines ethical, social and participatory questions linked to research taking place in the context of RD-Connect, NeurOmics and EURenOmics. Anyone working on these projects, or with an interest the work, can ask us a question.
How it works
The RD-PEC responds to any question about ethics, social issues and patient participation related to the work of the three projects mentioned. Anyone with an interest in the work can pose a question to the RD-PEC. The question and our answer will be made publicly available. Click on ‘Ask A Question’ above. Your identity and personal details will remain confidential.
The RD-PEC is a voluntary, multidisciplinary group comprised of patients, parents, representatives of patients’ organisations, clinicians, legal academics, sociologists, scientists and ethicists. The RD-PEC works in a collegiate, collaborative and inclusive manner to provide ethical, social and participatory guidance and balanced opinion, in order to enhance the excellence that RD-Connect, NeurOmics and EURenOmics aspire to.
Membership of the RD-PEC is voluntary and includes members of the Ethics Boards and Patient Councils of RD-Connect, Neuromics and EURenOmics, as well as some co-opted members. Members are listed below.
- EURenOmics aims to develop novel tools that will allow to make more accurate diagnoses, predict the disease course and the efficacy of available treatments for rare kidney diseases.
- NeurOmics aims to revolutionize diagnostics and develop new treatments for major neuromuscular and neurodegenerative diseases.
- RD-Connect will create an integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research.
RD-PEC Terms of Reference
Download a copy of the RD-PEC Terms of Reference here.