Ignite Creation Date:
2024-10-26 @ 3:42 PM
Last Modification Date:
2024-10-26 @ 3:42 PM
Study NCT ID:
NCT06642870
Status:
RECRUITING
Last Update Posted:
None
First Post:
2024-09-09
Brief Title:
Rare AutoImmune SElf-management Programme Development
Sponsor:
None
Organization:
None
Study Overview
Official Title:
Rare Autoimmune Self-management Programme Development
Status:
RECRUITING
Status Verified Date:
2024-10
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
No
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
RAISE
Brief Summary:
The rare autoimmune rheumatic diseases RAIRDs are life-long multi-system diseases that are life or organ threatening RAIRDs can impair quality of life similar to chronic diseases such as heart failure The aim of the study is to explore content and structure of a support programme for people with RAIRDs in focus groups and survey meetings
Detailed Description:
This project aims to provide self-management and psychological support for people with rare autoimmune rheumatic diseases The first aim is to ensure that the support provided is relevant for all people through reaching people who may not have been involved in research before The second aim is to get agreement for the content and structure of this support from people with these diseases and healthcare teams across the UK
The rare autoimmune rheumatic diseases include systemic lupus erythematosus vasculitis scleroderma myositis and Sjogrens syndrome They can affect people of any age and can be fatal They often have a negative impact on peoples quality of life social work and family life
Information was gathered from six online meetings with groups of people who have these conditions People wanted to know the truth about their disease and treatment alongside help adapting to living with a rare and serious disease A survey of NHS rheumatology departments shows that the majority 80 do not provide support to help patients deal with the impact of living with one of these diseases
Firstly six groups of patients in total 2 each in Bristol Weston-Super-Mare and Leeds will be organised with the help of community groups Focus groups will help gather a range of views regarding support needs
Secondly a UK-wide patient survey of support needs will be conducted translated into the ten most spoken languages in the UK Paper versions will be available in NHS rheumatology departments and an online version will be shared through patient charities
Lastly survey results and group responses will be used to build a picture of the type of support needed and how to achieve this in practice The research team will present the results to the patient partners involved charities NHS management and healthcare professionals asking the question How can support be achieved for patients with rare rheumatic diseases within the current NHS The research team will then make changes to the support programme based on the feedback received
The researcher leading the patient and public involvement will work closely with community groups The three patient partners who have lived experience one vasculitis and two lupus patients will work within the research team throughout the life of the project and will take part in all decision making A group will be formed from patient participants and patient research partners to help design the next steps of the support programme together
Patient research partners will help design how the outcome of this research will be shared with healthcare professionals and patients This will include publications lay summaries shared by patient organisations and presentations at conferences and community events
The rare autoimmune rheumatic diseases include systemic lupus erythematosus vasculitis scleroderma myositis and Sjogrens syndrome They can affect people of any age and can be fatal They often have a negative impact on peoples quality of life social work and family life
Information was gathered from six online meetings with groups of people who have these conditions People wanted to know the truth about their disease and treatment alongside help adapting to living with a rare and serious disease A survey of NHS rheumatology departments shows that the majority 80 do not provide support to help patients deal with the impact of living with one of these diseases
Firstly six groups of patients in total 2 each in Bristol Weston-Super-Mare and Leeds will be organised with the help of community groups Focus groups will help gather a range of views regarding support needs
Secondly a UK-wide patient survey of support needs will be conducted translated into the ten most spoken languages in the UK Paper versions will be available in NHS rheumatology departments and an online version will be shared through patient charities
Lastly survey results and group responses will be used to build a picture of the type of support needed and how to achieve this in practice The research team will present the results to the patient partners involved charities NHS management and healthcare professionals asking the question How can support be achieved for patients with rare rheumatic diseases within the current NHS The research team will then make changes to the support programme based on the feedback received
The researcher leading the patient and public involvement will work closely with community groups The three patient partners who have lived experience one vasculitis and two lupus patients will work within the research team throughout the life of the project and will take part in all decision making A group will be formed from patient participants and patient research partners to help design the next steps of the support programme together
Patient research partners will help design how the outcome of this research will be shared with healthcare professionals and patients This will include publications lay summaries shared by patient organisations and presentations at conferences and community events
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None