RecruitingOBSERVATIONAL

Rare AutoImmune SElf-management Programme Development

This study, called "Rare AutoImmune SElf-management Programme Development," is looking at how to create a helpful support program for people with certain rare autoimmune diseases such as lupus, vasculitis, and Sjogren's syndrome. These are long-term conditions that can seriously affect daily life. The researchers want to understand what kind of support people with these conditions need and how best to provide it. They are gathering opinions from patients and healthcare professionals across the UK through group discussions and surveys. The goal is to design a program that helps people live better with their condition, making sure the support is relevant and easily available.

At a glance

Status

Recruiting

Sponsor

University of the West of England

Enrolment target

360

Start

01 Oct 2024

Estimated completion

01 Apr 2026

Systemic Lupus Erthematosus Systemic Vasculitis Inflammatory Myositis Systemic Sclerosis (SSc)ANCA Associated Vasculitis (AAV)Sjogren Syndrome

What is this study about?

This research project focuses on creating a new support program for people living with rare autoimmune diseases like lupus, vasculitis, scleroderma, myositis, and Sjogren's syndrome. These conditions are sometimes called 'rare autoimmune rheumatic diseases' and they can affect many parts of the body, potentially threatening organs or even life. They are long-lasting illnesses that can significantly impact a person's everyday life, sometimes as much as other serious chronic diseases like heart failure.

The main idea behind this project is to figure out what kind of self-management and emotional support would be most helpful. The researchers want to hear from a wide range of people, including those who haven't taken part in research before, to make sure the program fits everyone's needs. They're also working with healthcare teams across the UK to get everyone's agreement on what the support program should include and how it should be organised.

To do this, the study has already involved online group discussions where people shared what they wanted, such as clear information about their disease and help coping with a serious illness. The next steps involve more group meetings and a UK-wide survey, available in several languages, to understand support needs even better. The findings will then be used to create a clear plan on how to provide this important support within the NHS.

Key takeaways

This study aims to improve support for people with rare autoimmune diseases.
It's about understanding what kind of self-management and emotional help patients need.
Participation involves sharing your views in groups or through surveys, not medical treatments.
Your input will help shape future NHS support programs.
The study is for adults (18+) diagnosed with specific rare rheumatic conditions.
It's open to all genders.

Who may be eligible?

You might be able to take part in this study if you have been diagnosed by a hospital doctor with a rare rheumatic condition. This includes conditions like lupus, systemic vasculitis, myositis, or Sjogren syndrome. You can tell us yourself if you have one of these diagnoses.

To join, you also need to be able to understand the study and agree to take part. If you need help with translation to understand the information, that's perfectly fine and can be arranged.

This study is for adults aged 18 and over, and it's open to everyone, regardless of whether you are male or female.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been diagnosed by a hospital doctor with lupus, vasculitis, myositis, or Sjogren's syndrome?
Can you understand information about a study even if you need some help with translation?
Are you able to agree to take part if you choose to?

Answer every question to see your result.

What does participation involve?

This is a "non-interventional" study, which means you won't be given any new medications or treatments. Instead, your involvement would typically include sharing your thoughts and experiences through group discussions or by completing a survey. You won't need to visit a clinic or have any medical assessments as part of this study. The total time you spend participating will depend on whether you join a focus group or complete a survey. You might be asked to participate in group discussions, probably online, or fill out a questionnaire. There is no long-term follow-up required for this study.

Potential risks and benefits

Participating in this study offers the opportunity to help shape future support for people with rare autoimmune diseases across the UK, potentially improving the lives of many. There are no known physical risks as this study doesn't involve any medical procedures or experimental treatments. The main benefit is contributing your unique experience to help develop better patient support. You are always free to withdraw from the study at any time without giving a reason, and it will not affect your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of the West of England/ Bristol Royal Infirmary
Verified postcode
Bristol, United Kingdom· Recruiting

Common questions

What kind of diseases is this study about?

It's about rare autoimmune diseases like lupus, vasculitis, scleroderma, myositis, and Sjogren's syndrome.

Will I be given any new medicines?

No, this study doesn't involve any new medicines or treatments; it's about understanding support needs.

How will my information be used?

Your experiences will help design a better support program for people with these conditions within the NHS.

Do I need to travel if I participate?

Most likely not. Early parts of the study involved online meetings, and surveys can be completed at home or in clinics.

Can I still get my usual medical care if I take part?

Yes, taking part in this study will not affect any of the medical care you currently receive.

How to find out more

Dr J Robson

Jo.Robson@uwe.ac.uk 0044117-342-7418 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.