Living with Progressive Supranuclear Palsy and Corticobasal Degeneration comes with daily struggles, not only for the people who have the conditions but also for their carers and families. While every experience is unique, there are many common issues that everyone affected by PSP & CBD goes through, including delays in diagnosis, managing complex symptoms that affect movement, speech, and cognition, difficulty accessing specialist care and support, lack of awareness and knowledge, and the long-term financial impact of these rare neurodegenerative diseases.
The good news is that clinicians and healthcare professionals are keen to understand the impact of these challenges. They are undertaking research studies aimed at improving the quality of life and experiences of people affected by PSP & CBD. One such research study related to PSP & CBD that focuses on understanding the real experiences of people affected by Atypical Parkinsonian Syndromes (APS) is the IMPROVE APS Study.
Recruitment for the same is now open.
If you are living with APS (such as PSP, CBD, or MSA), or are a family member, partner, or unpaid carer of someone with APS based in England, you are invited to participate and share your experiences in a confidential interview.
By taking part, you can help researchers better understand:
- What is working well.
- Where systems break down.
- How support could be strengthened.
Your insight and experiences can help shape better care pathways for everyone who is living with PSP & CBD or may be diagnosed with APS in the future.
How can you get involved?
The study is being conducted by researchers at the University of Hertfordshire and the Southampton Hospital Trust. Participation is completely voluntary, and all information you provide will be anonymised. You will be invited to share your experiences in a confidential interview with a member of the research team.
All interviews will be conducted with sensitivity, respect and flexibility.
You can choose the format that works best for you:
- In person.
- Over the phone.
- Online (virtual interview).
The impact of your participation
Speaking about your experiences with PSP, CBD, or other similar conditions can be overwhelming and may feel like a big step. But this could be your opportunity to talk openly about your struggles and feel heard by experts who can help bring about a change.
By sharing your story, you can help:
- Improve understanding and awareness of APS among healthcare professionals.
- Ensure families receive the support they deserve.
- Improve care pathways and support services.
Help shape the future of APS care
If you or someone you care for has been affected by an Atypical Parkinsonian Syndrome like PSP, CBD, or MSA, we would encourage you to consider taking part and help build a better future for people living with these conditions.
If you would like to find out more or express your interest in taking part in this research study, please contact the research team at ImproveAPS@hets.ac.uk.
