About the Initiative

What is the EJS ACT-PD initiative?

We are aiming to revolutionise clinical trials in Parkinson’s disease, by developing a multi-arm, multi-stage platform to accelerate our search for a cure. Currently, there is a gap between each phase of clinical trial, which adds significant delays. Each time a new trial starts, its infrastructure has to be rebuilt from scratch. With Parkinson’s being the fastest growing neurological condition in the world, we need a more efficient way to find answers.

EJS ACT-PD is a patient-driven project which brings together a range of experts, passionate about advancing the delivery of effective Parkinson’s treatments. Our innovative trial platform will simultaneously assess multiple treatments, all designed to slow disease progression. This ground-breaking approach intends to address the challenges in Parkinson’s research and deliver much-needed results, faster.

Our Goals

We are at a critical time point in Parkinson’s research. The number of people with Parkinson’s is expected to reach over 12 million by 2040.

Exciting advances mean a number of treatments with the potential to slow Parkinsons can now be tested simultaneously, fast-tracking their assessment to provide the Parkinson’s community with answers sooner. The EJS ACT-PD multi-arm, multi-stage (MAMS) platform is a smarter, faster, more cost-effective trial that has been designed to match the urgent pace required.

We are transforming and speeding up the testing of treatments that can slow or stop Parkinson’s, as well as identifying new, more accurate and faster ways of assessing their efficacy.

Our goals in Stage 2 of the Initiative include:

Support the trial and sub-study launch (led by MRC CTU)

Identify future innovations and improvements for the trial (and how to amend the design to incorporate them)

Determine the next sub-studies (and secure funding to support their opening)

Prioritise the most promising future treatment arms (arms 4-6 initially)

Secure funding to continue the trial (including next treatments and future sub-studies)

See our answers to the questions below:

Question 1: Why was a transformation needed?

Answer:

The way clinical trials have always been set up, treatments were tested one at a time and the trial process was repeated as it passed through the trial phases. This made it a very lengthy and inefficient process. We urgently needed faster, smarter trials that are able to speed up this process.

Question 2: What does EJS ACT-PD do differently?

Answer:

We have set up a multi-arm trial that can assess several treatments simultaneously. We will analyse treatments regularly to see if they appear to be effective. Those that seem effective will be continued, and those that don’t will be replaced with new possible treatment options, without any delay being incurred.

Question 3: How did EJS ACT-PD address this challenge?

Answer:

We assembled multiple expert groups to focus on the different decisions required to produce the trial. Most importantly, people with Parkinson’s and their caregivers were – and are still – involved in the decision-making processes, so that we remain focused on patient needs as we continue to develop and improve the trial.

About the initiative:

From 2025, the EJS ACT-PD Initiative has transitioned into stage 2. Building on the design and planning completed in Stage 1, this phase focuses on the future and ensuring the trial remains at the forefront of innovation. It includes implementing the trial infrastructure, activating novle sub-studies (such as biosamples, digital measures, genetic analysis, partner involvement), and preparing for future treatment arms. Stage 2 marks the transition from design to real-world delivery, with the trial designed to grow and adapt over time.

The trial provides a unique opportunity for furthering our understanding of Parkinson’s, due to it’s large and complex data collection pathways. The initiative is keen to develop partnerships with external groups to further support the wider Parkinson’s research field. Information on the collaboration process can be found here.

Our Working Groups

In stage 2 of the initiative we have four expert Working Groups, focused on continuing to identify and introduce innovations into the trial and ensure it’s long-term sustainability:

Trial Innovation Working Group (TIWG): To develop protocol amendments to incorporate future design improvements and innovations. This includes receiving recommendations from subgroups including the digital measures and statistical subgroups.
Treatment Selection Working Group (TSWG): To continuously iterate the treatment selection process for efficiency and robustness and implement this process to prioritise the most promising trial treatments for treatment arm 4 and onwards.
Funding and Commercialisation Working Group (FCWG): To secure ongoing funding to sustain the core trial past the first three treatments and support the addition of future trial sub-studies. This includes improving engagement with commercial organisations and supporting future industry partnerships, and working with stakeholders in the charity and philanthropy sector.
Patient and Public Involvement & Engagement (PPIE WG): To provide ongoing input and feedback from the perspective of people with PD and their carers / partners. Additional patient input groups including the Community Advisory Panel (CAP) and PPIE Wider Network will continue to feed into this group.