We need your help in identifying the questions that matter the most to you!

PSPA supports people living with Progressive Supranuclear Palsy (PSP) & CorticoBasal Degeneration (CBD)*.  Through the funding of innovative research we aim to improve diagnosis, discover effective treatments, to understand the conditions and look to identify better ways to improve the health, quality of life and care for patients. 

In order to meet these objectives, PSPA is reviewing its current research strategy and wants to ensure that their future strategy encompasses the research needs of people affected by PSP & CBD, by giving researchers, health professionals, patients and carers a say in what is important to them. 

The results of this study will help our charity fund research in the areas where there are gaps in knowledge.

What’s involved if I take part in the study?
Participating in the study is voluntary. It involves completing this questionnaire. The information provided through this questionnaire will then feed into a “ranking phase” of the study to identify the Top Ten Research Priority Questions for PSP & CBD.  

We are asking people to complete the survey from carers to patients to neurologists, physio, speech and language, occupational therapists to specialist nurses.

Please do pass this link onto others who you think may have an interest in participating in this survey. We want to have input from as many people and specialists and researchers as possible. Together we can make a difference.

If you are interested in being kept informed about other PSPA research including future funding opportunities please complete the section at the end of this questionnaire and give your consent to be contacted by PSPA.

Will my answers be kept confidential?
All personal information will remain confidential and when we release the results of the study, we will never identify any individual responses to the questionnaire.

What will happen to the results?
PSPA will make the final results public, and use the results to inform the PSPA 2020-2023 Research Strategy and Research Funding Programme.  PSPA will also work to promote the results of the questionnaires with other organisations that fund PSP & CBD research.

Who can I contact for more information? 
If you would like more information, please email: research@pspassociation.org.uk or call 0300 0110 122.

The deadline for the return of the form is Friday 31 January 2020
*PSPA uses the terminology of CBD rather than CBS