Road to collaboration 3 – I am a customer

This is the third step along the Road To Collaboration in clinical trials. My second article ended on the realisation that significant remission of symptoms exacts an unexpected toll on a participant.The memory of function temporarily restored is now being aggravated. The Foliglurax Trial is reportedly slipping, so disclosure of drug/placebo remains a distant prospect. To the lack of […]

Read More

The Road To Collaboration 2 – Clinical Trials

Sponsors of clinical trials need participants, but people do not need to participate. They may want to, but they do not have to. Want implies freedom of action and an expectation of persuasion. The difference between want and need tells us who ultimately should be in charge of thiis arrangement. A Clinical Trial Team is an agent […]

Read More

Some alternative ways to get PD research done: Part 1. PwP as researchers

This is a guest blog by John Turner, who runs the site Parkinson’s measurement. This article is the first in a series of seven linked essays. In it, we describe some alternative ways to do PD research; ways that might quickly improve the quality of life (QOL) of people with Parkinson’s (PwP). Here, we are only […]

Read More

Road to Collaboration 1 – Engaging PwP in research

I am grateful to Ben Stecher for publishing the  first edition of this article and  introducing me to PRAG.  Let’s start with a simple generic question. Will the life science researcher engage with the layman?  Obviously yes if the layman is, or possesses, something the researcher needs. Most likely not if the researcher believes the layman […]

Read More

British Medical Journal. Ben Stecher et al: Research into Parkinson’s Disease needs reform

“As Parkinson’s Disease (PD) patients and research advocates, we remain hopeful that the whirlwind of research and translational studies which flood the pages of journals around the world will result in treatments that significantly improve quality of life for people with PD within our lifetime. While the Parkinson’s community continues to wait, however, we must […]

Read More

Patient Advocates Respond to the viewpoint on “The Parkinson Pandemic”

This post was originally posted on the WPC blog: link.  The scientific journal JAMA neurology recently published a viewpoint titled “The Parkinson Pandemic – A Call to Action” 1authored by well-known and highly respected professors and movement disorder specialists Ray Dorsey, M.D. and Bastiaan Bloem, M.D., Ph.D. The article was received with great interest from […]

Read More