Well done for encouraging people to take part in research trials and especially for encouraging diversity. Parkinson's UK works hard to raise awareness of this issue. However, in my experience the research community itself could do a lot to improve recruitment, starting by getting more PWP involved with the management of research projects so that they can provide the "perspective of the prospective". Better communication and responsiveness to their potential candidates and the removal of unnecessary restrictions on potential candidates would help too. Some research centres do this well, others are woefully lacking, perhaps we need an award scheme or similar to encourage good practice.
Clinical trials for Parkinson's have traditionally been performed one at a time which is inefficient, not least because a placebo group is needed for every group of people taking the candidate drug.
A major new UK initiative called ACT-PD, which stands for Accelerating Clinical Trials in Parkinson's Disease aims to create a sort of clinical trial factory where several trials are run in parallel with a single placebo arm. The process runs continuously so that when a drug fails to show efficacy, it is replaced with a new drug. This means a lot of start up costs are also minimised.
ACT-PD will be starting in 2024 and will initially be looking for around 1,600 participants across a range of ages and ethnicities in multiple UK locations. See https://ejsactpd.com/ for more details.
Well done for encouraging people to take part in research trials and especially for encouraging diversity. Parkinson's UK works hard to raise awareness of this issue. However, in my experience the research community itself could do a lot to improve recruitment, starting by getting more PWP involved with the management of research projects so that they can provide the "perspective of the prospective". Better communication and responsiveness to their potential candidates and the removal of unnecessary restrictions on potential candidates would help too. Some research centres do this well, others are woefully lacking, perhaps we need an award scheme or similar to encourage good practice.
Clinical trials for Parkinson's have traditionally been performed one at a time which is inefficient, not least because a placebo group is needed for every group of people taking the candidate drug.
A major new UK initiative called ACT-PD, which stands for Accelerating Clinical Trials in Parkinson's Disease aims to create a sort of clinical trial factory where several trials are run in parallel with a single placebo arm. The process runs continuously so that when a drug fails to show efficacy, it is replaced with a new drug. This means a lot of start up costs are also minimised.
ACT-PD will be starting in 2024 and will initially be looking for around 1,600 participants across a range of ages and ethnicities in multiple UK locations. See https://ejsactpd.com/ for more details.