The Buddy Scheme is an informal collaboration between two sites interested in delivering Parkinson's research. It is essentially about linking up an experienced researcher with someone who has less or no experience in delivering clinical research. This is with the hope that developing an effective communication channel to facilitate knowledge sharing will fulfil the individual with the confidence to lead and deliver more research.  

To learn more about the Buddy Scheme or register interest, please contact Emma Fargher md4efa@sheffield.ac.uk 

What is the Associate PI Scheme?

The Associate Principal Investigator (PI) Scheme aims to develop doctors, nurses & other health care professionals (HCP) to become PIs of future research studies. It is a six month in work training opportunity whereby research skills and experience of NIHR portfolio trial are gained. The HCP is mentored by an enthusiastic local PI. Recognition of engagement is through certification of Associate PI status, endorsed by the NIHR and Royal Colleges.

Interest in taking part in the scheme? Click here

Wanting to register your study into the scheme? Click here

Find out more on the NIHR Associate PI Scheme Page and FAQ page

Good Clinical Practice (GCP) is an international ethical, scientific and practical standard upheld throughout clinical research. It ensures that everyone involved in conducting clinical research does so to a high standard to protect the rights, safety and wellbeing of study participants.  The UK Policy Framework for Health and Social Care Research states that GCP training is required for researchers conducting clinical trials of investigational medicinal products. 

Click here to visit the NIHR Good Clinical Practice Training

This online training aims to capture best practice and provide researchers with a frameowrk on how to iprove the participation of Ethnic Minority Groups in research.

To find out more, search the title of the training on NIHR Learn

This training is appropriate for staff working to support research delivery.  You may be caring for a patient who is also a research participant.  You may have been invited to work within a research study team where you are following clearly defined processes. 

To find out more, search the title of the training on NIHR Learn

UK PD-CSG

The UK PD-CSG have 5 PPI Representative Members who are on hand to discuss studies and grant proposals. They add valuable insight from a perspective of someone living with Parkinson's to improve the quality of the study. 

Read more about PPI within the UK PD-CSG here

To request PPI support, please contact the UK PD-CSG Coordinator, Emma Fargher md4efa@sheffield.ac.uk 

Parkinson's UK  

Parkinson's UK offers Patient and Public Involvement support to all researchers. To request this support visit the Parkinson’s UK Patient and Public Involvement support webpage

The Parkinson's UK Staying Connected Toolkit provides free communication resources which can be used to keep participants updated with the study progress and information. There are resources relevant to the whole duration of the research,  from consent to publication. 

The toolkit includes a guide and framework regarding optimal communication with research participants. It also include templates:

• Notecard Template

• Last Active Visit Template

• End of Recruitment Template

• Newsletter Template

• Short Updates Template

• Communicating with Participants via Podcasts

• Communicating with Participants Online

Learn More Here: Website Link 

Download the Toolkit here: PDF Toolkit

The Progressive Supranuclear Palsy (PSP) Association is a charity focusing on PSP and Corticobasal Degeneration (CBD). The PSPA funds and stimulates research into these conditions; read their Research Strategy here. 

PSPA leads a number of initiatives to increase the involvement and participation of people with these conditions in the important research taking place: 

Patient and Public Involvement Group

PSPA have a PPI group that researchers can interact with to gain valuable feedback. The group can review their study documents to improve accessibility of their studies. The group comprises mostly of ex-carers. 

Research Engagement and Registry

PSPA are engaged with over 1900 people with PSP/CBD; over 1500 carers and over 1500 health and social care professionals. 

They also hold a registry of people who are interested in learning about and potentially taking part in research. Researchers can share their research opportunities and studies through this registry to boost engagement and recruitment in studies.

For more information about research opportunities and resources, please visit the PSPA webpage or contact Megan Hodgson Megan.Hodgson@pspassociation.org.uk