The Registration of Complex Rare Diseases – Exemplars in Rheumatology (RECORDER) group relies on the input of a number of dedicated patients and carers to shape the project and to inform how project findings are communicated to other patients.
The contribution that patients and carers have made to the RECORDER project has been invaluable for enhancing the quality, appropriateness, acceptability and relevance of research, ensuring it addresses issues of importance to patients and the public. This has been a result of:
- Patients and carer contribution to workshops, meetings and events to decide the focus and direction of our work
- Patients providing invaluable feedback on our project exploring whether guided imagery can help to cope with illness
- Patient representatives ensuring that we use accessible and appropriate language when communicating our work to other patients
If you feel that you can use your experiences to contribute to the work of the RECORDER team, please get in touch via the email address at the bottom of this page. We would be delighted to involve more patients andd carers in the team.
Plain language summaries of research and other reports
The Guided Imagery for Coping with Illness project explored whether guided imagery techniques can help people to cope with and manage illnesses like vasculitis by improving symptoms such as anxiety, depression, fatigue & pain.
The Guided imagery exercises are available for use via Vasculitis UK.
Impacts of appearance and weight changes due to long-term steroid use
Plain language summary on the Vasculitis UK website
Postcard
MELODY*- this study recruited more than 35,000 immunocompromised people, including people with rare rheumatic diseases, to determine their immune response to the Covid-19 vaccination and assess future risk of infection, hospitalisation and survival.
Visual abstract: first results from MELODY
Visual abstract: final results from MELODY
*Mass Evaluation Of Lateral Flow ImmunOassays To Detect SARS-CoV-2 AntibodY Responses In Immunocompromised Populations
Kawasaki disease - The incidence of Kawasaki disease using hospital admissions data for England 2006-2021
Understanding Patient Data is an organisation aiming to make the way patient data is used more visible, understandable and trustworthy, for patients, the public and health professionals. They have reported on Public attitudes about patient data. This reports the results of a UK survey of 1000 people about their attitudes to their patient data being used for planning and population health research.
Patient and carer newsletters
We regularly send updates about upcoming events or news related to rare diseases via our mailing list, If you would like to be added to the list, please get in touch at the email address below. Read our previous mail outs here:
October 2025
June 2025
May 2025
October 2024
June 2024
May 2024
February 2024