For a number of years we have received feedback at the Parkinson’s Academy about including sessions about research. Taking these responses and working with The Cure Parkinson’s Trust (CPT) and NIHR leads Dr Camille Carroll, Professor Oliver Bandmann and the Academy’s Dr Peter Fletcher, we designed the Research Engagement meeting for professionals who are becoming or aspire to become involved with Parkinson’s research on many different levels. Each week we are posting a blog to look at the meeting’s speaker sessions in more detail.

 

Amelia Hursey, Parkinson’s UK

The final session was presented by Parkinson’s UK’s Amelia Hursey who shared the charity’s new online trial resource called Taking Part which lists studies made searchable by postcode.

The site was designed following detailed research with PwP (people with Parkinson’s) who revealed that 70% of PwPs want to take part in research but only 24% have taken part. Many PwPs reported that they wanted to hear about research opportunities within a year of diagnosis so providing a ways to finding this information is important.

‘It comes down to communication. And it comes down to having the information at hand.’

This online resource is designed to increase self-referral and can help PwP and their healthcare team identify the research opportunities that might be right for them, which might fall outside their own local area.

→ parkinsons.org.uk/research/take-part-research

 

Listen to this presentation:

→ Presentation slides (PDF file)

→ More articles and videos from this meeting

  

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