PSPA Research Involvement Members (PRIM)

PSPA RESEARCH INVOLVEMENT MEMBERS (PRIM)

PSPA’s Research Involvement Members, or PRIM, was established in 2022.

PRIM is formed of a group of people all of whom are affected by PSP or CBD in someway.

They use their experience of PSP & CBD and interest in progressing research, to help PSPA create better patient-centred studies. PRIM do this by feeding into PSPA regularly via online meetings, taking part in patient advocacy programmes developed by pharmaceutical companies, and shaping literature about research.

As a member of the AMRC, we recognise the importance of involving the public in producing high quality research that has meaningful outcomes. You can read their position statement here.

PRIM MEMBERS

Currently, there are 10 members of PRIM who work alongside our Research Coordinator.

You do not need a medical or scientific background to be part of PRIM. Each of our PRIM members bring a unique perspective arising from their experience of living with, or caring for someone with PSP or CBD.