Overview of groups
We have two Advisory Groups helping us to conduct this research:
Lived experience experts group (LEEG)
This group consists of people who live with, or are parents/carers for someone who lives with, a rare condition. They bring a variety of experiences of care and a diverse background including different types of rare conditions. They are advising on and influencing how the research progresses.
Study Steering Committee (SSC)
This group involves researchers and other experts with in-depth knowledge about particular research methods or research topics.
Lived Experience Experts Group (LEEG)
The CONCORD2 LEEG is co-chaired by one of our Patient and Public Involvement (PPIE) co-applicants. The LEEG meets roughly every six months and provides input on the design, analysis and interpretation of the research, as well as on the dissemination strategy.
The establishment of the LEEG, which was originally called the PPIE advisory group, has been driven by two of our PPIE co-applicants. They are both from patient organisations: Genetic Alliance UK, an alliance of over 200 individual organisations of patients and families affected by genetic and rare conditions; and Breaking Down Barriers, a network of over 70 organisations working to address health inequalities and improve involvement and engagement with people from diverse, marginalised and under-served communities.
Study Steering Committee (SSC)
The SSC is made up of health professionals with expertise in rare conditions; representatives able to contribute from a lived experience perspective (being either a person affected by a rare condition and/or the parent or carer of a person affected by a rare condition); and researchers with expertise in qualitative and quantitative research (including health economics methods).
The SSC meets twice a year and its role is to provide overall supervision for the study on behalf of the Study Sponsor and Study Funder and to ensure that the study is conducted to the highest standards set out in the Department of Health’s Research Governance Framework for Health and Social Care and the Guidelines for Good Clinical Practice