The Cleft Collective is the world’s largest cleft lip and palate research programme. The project is an initiative of the UK charity The Healing Foundation, supported entirely by voluntary contributions.
Our research aims to make significant progress towards answering three key questions:
(For the Plain language summary please see: http://www.comet-initiative.org/resources/PlainLanguageSummary). The COMET (Core Outcome Measures in Effectiveness Trials) Initiative brings together people interested in the development and application of agreed standardised sets of outcomes, known as ‘core outcome sets’. These sets represent the minimum that should be measured and reported in all clinical trials of a specific condition, and are also suitable for use in clinical audit or research other than randomised trials. The existence or use of a core outcome set does not imply that outcomes in a particular trial should be restricted to those in the relevant core outcome set. Rather, there is an expectation that the core outcomes will be collected and reported, making it easier for the results of trials to be compared, contrasted and combined as appropriate; while researchers continue to explore other outcomes as well. COMET aims to collate and stimulate relevant resources, both applied and methodological, to facilitate exchange of ideas and information, and to foster methodological research in this area.
The Health Foundation is an independent charity working to improve the quality of healthcare in the UK.
We want the UK to have a healthcare system of the highest possible quality – safe, effective, person-centred, timely, efficient and equitable. We believe that in order to achieve this, health services need to continually improve the way they work.
We are here to inspire and create the space for people to make lasting improvements to health services.
We conduct research and evaluation, put ideas into practice through a range of improvement programmes, support and develop leaders and share evidence to drive wider change.
The McPin Foundation exists to transform mental health research by putting the lived experience of people affected by mental health problems at the heart of research methods and the research agenda.
We work in three main ways:
We are a network of service users, patients and carers with personal experience of living with pressure ulcers or being at risk of developing pressure ulcers. Our network aims are:
The network is supported by the Clinical Trials Research Unit at the University of Leeds but we have members from across the UK.
We are a small, friendly patient and public involvement (PPI) group based in East Yorkshire, with members who have experience of a range of health conditions including cancer, heart disease and diabetes.
We draw our members from both banks of the Humber, and we work with health researchers from Hull, East Yorkshire, Northern Lincolnshire and Goole. We also work with researchers from the Hull-York Medical School and local universities.
The Arthritis Research UK Epidemiology Unit/Manchester Musculoskeletal Biomedical Research Unit’s Research User Group (RUG) is a group of lay individuals who have an active interest in musculoskeletal health, either living with a musculoskeletal condition themselves or caring for someone who does.
Its main purpose is to assist the Arthritis Research UK Epidemiology Unit in all aspects of research. The group currently comprises of 11 members with a range of musculoskeletal conditions including Rheumatoid Arthritis, Juvenile Idiopathic Arthritis, Lupus, Osteoarthritis, Psoriatic Arthritis and Ankylosing Spondylitis and they meet every three months at the Wellcome Trust Clinical Research Facility in Manchester.
Autism@Manchester is a community of academics, clinicians, practitioners, autistic adults, parents of autistic children and family members working together to achieve quality research with real meaning for people with autism.
Our key aims are to bring academics, clinicians and other practitioners together with members of the autistic community to:
The University of Western Australia School of Population Health is a leading teaching, research and service organisation that influences health policy and practice. The Telethon Institute for Child Health Research is one of Australia’s largest research institutes dedicated to improving child Heath and well being through research. These two organisations run a joint one-of-a-kind Consumer and Community Participation Program.
