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Patient and Carer Voices in Research

Many people affected by PSP and CBD find that research is a source of hope.


“Patient and Carer Voices in Research” (PCVR) is a new initiative developed following a wide consultation with members, health professionals, researchers and the wider research community. PCVR is a key element of Patient Engagement strand of the new PSPA Research Strategy. PSPA aims to:

  • Support research which reflects patient views and priorities and encourage anyone who wants to take part in research to do so, giving them a Patient and Carer Voice in Research.
  • Educate members and supporters by working with local groups about PSP and CBD
  • Support the helpline team in answering enquiries, providing research information and answering scientific questions
  • Working with pharmaceutical patient advocacy teams to encourage patient engagement in clinical trials

Dr Wendy Edwards, Research Manager at PSPA says “I am passionate about involving patients and carers in all stages of the research process, from the review of patient information relating to a clinical trial to ensuring patient focussed outcomes are included in a study – patients know their condition better than anyone can”

Researchers are keen to engage patients in their work and listen to the people with the conditions.  It can be very rewarding taking part in research and often offers the opportunity for patients to learn more about their conditions too. The research could lead to new diagnostic tests, treatments and/or improvements in daily living care and support.

“It was very important to George to be able to make a contribution to research that might help someone else.”

Kathryn Timmons, whose husband George lived with PSP.

By working closely together we can make a difference. If you would like to take part in research then please review the list of projects below and reach out to one of the researchers for more information.

Join our Patient and Carer Voices in Research Network here.