The best way of knowing if new treatments work is by running a clinical research trial. This allows researchers to understand whether a drug or other treatment is having a benefit. Clinical trials usually compare two groups of people (the trial participants):

• one group who gets the trial medication (with or without their usual care, depending on the trial)
• one group who gets their usual care and sometimes a ‘placebo’ (a fake treatment that looks like the trial medication but doesn’t do anything. This is also called a dummy drug).

EJS ACT-PD is a multi-arm, multi-stage (MAMS) trial. This means that researchers can test multiple different treatments against one placebo group. In EJS ACT-PD, the trial will start with three groups (or arms):

• One group that gets the trial medication telmisartan (with their usual care)
• One group that gets the trial medication terazosin (with their usual care)
• One group that gets the placebo (plus usual care).

This trial design also allows us to add new treatments in new treatment groups (arms) whilst the trial is ongoing. As the trial progresses, we plan to add future arms testing more research treatments.

The treatments were chosen after carefully looking at all the available evidence that has been published about them. People with Parkinson’s and care partners were involved in the discussions and advised on what would be acceptable to participants.

The trial treatments have been ‘repurposed’ for Parkinson’s. This means that they are used to treat other conditions, but there is some evidence to show they could also work to slow down Parkinson’s progression. We also already understand their safety and possible side effects. In the trial, the team will check if they are effective and how safe they are when taken by people with Parkinson’s over a long period of time.

The trial team aims to recruit 1600 people with Parkinson’s in the first instance, and they expect to have finished recruitment about 4 years after the trial starts. But all participants will need to take the trial treatments for up to 3 years to check what effect they are having compared to the placebo.

People with Parkinson’s and their carers and loved ones have been involved in all parts of designing the trial as part of the Patient and Public Inclusion and Engagement (PPIE) Working Group.

The PPIE working group have helped:

• make the trial as easy as possible for people to take part in
• make sure that people who take part in the trial have a positive experience
• include participant feedback to improve the design of the trial
• provide results that are meaningful for people with Parkinson’s.

EJS ACT-PD also has a Community Advisory Panel (CAP). The CAP includes patient and public members from a range of different ethnicities, locations, and health conditions, including Parkinson’s. This is important, as Parkinson’s can affect people differently based on their age, gender, and ethnicity. Everyone must be represented in the research trial to make sure treatments work for as many people as possible.

The EJS ACT-PD trial will be taking place at over 40 sites across England, Wales, Scotland and Northern Ireland. You can find a full list of trial sites on the EJS ACT-PD website.

The team is working with local sites to train and prepare staff at all local sites. Some sites will be ready quickly, while others will take more time. They hope to have all sites open and ready to recruit participants by mid 2026.

The timeline for opening a new site can vary. There are multiple reasons why, including:

• Administrative requirements - sites need to create contracts and site-specific documents, which can take time.
• Trial staff availability
• Site capacity – many sites run multiple trials at once, and so they may want to finish one trial before launching a new one.

If you decide you would like to take part, you should complete the registration of interest form. You can find the link to the form on the trial website. If you need help completing this form online, your family, friends or local care team can help.

You can contact uclh.ejs.actpd.enquiries@nhs.net

You can also find out more about the trial on the EJS ACT-PD website https://www.ejsactpd.com/

Once you have been contacted by your chosen local site trial team or clinical care team, they will be able to discuss this with you.  Their contact details will be provided to you at your pre-screening call.

We apologise that the trial team at MRC CTU cannot advise on clinical or eligibility queries.

You can also visit the Parkinson's UK website or visit the Cure Parkinson’s website for more information and support about the condition.

Once you have completed the registration of interest form, you will receive a confirmation email. This will include information on whether or not you are eligible to take part. However, due to the high volume of registrations and staggered site opening, it may take some time. It may be several months before a local site gets in touch with you.

If you are eligible, the EJS ACT-PD trial will send you updates on trial progress via email approximately every 2 months. If you receive EJS ACT-PD trial updates, then our registration of interest form has been received, and you are potentially eligible to take part.

The EJS ACT-PD trial is looking for people with Parkinson’s who:

• were diagnosed with Parkinson’s at age 30 or over
• have been taking dopamine medication to treat their Parkinson’s for at least the past 2 months before starting the trial
• can commit to taking trial medication once a day for up to 3 years

You won’t be able to take part if, you have:

• certain Parkinson’s gene mutations (PRKN, PINK1, DJ1)
• blood pressure that is too low (checked by study team)
• had advanced Parkinson’s treatments (e.g. DBS)
• a diagnosis of dementia
• or you are breastfeeding, pregnant, or plan to become pregnant while part of the trial

Not everyone is able to take part in the trial, so please fill out the Registration of Interest form to see whether it may be suitable for you.

After you’ve submitted the registration of interest form, you'll be notified on-screen immediately after submitting if you may not be eligible.               

If your answers suggest that you may be able to take part, when your local site is open, you will be contacted by a member of the trial team to discuss the trial. This is called a pre-screening call.

Once you have registered to join the trial and your answers suggest that you may be able to take part, the trial team will contact you via telephone to double-check your eligibility for the trial.

If you still meet the eligibility criteria for the trial, then the next step is arranging an in-person screening visit.

Pre-screening is the telephone call that you will receive from your chosen hospital site if you have submitted a Registration of Interest and your answers suggest that you may be able to take part. It may be a while before you receive this call.

On this call, you will be asked to chat through the answers you have given, see if anything has changed, and the team will ask you some more questions to see if you are suitable for the trial. It is also an opportunity for you to ask any questions or concerns you may have about the trial or your eligibility. If the site trial team thinks you might be able to take part, they will invite you to visit your local trial site for an in-person screening appointment.

If you have been diagnosed with a Parkinson’s-like condition, unfortunately, you are not eligible to take part in the trial.

The EJS ACT-PD trial is also recruiting partners of people with Parkinson’s who take part, as part of the ‘partner sub-study’. Partners will be asked to complete online questionnaires about their quality of life. However, partners can only take part if the participant with Parkinson’s also consents to their involvement. Please note that partners will not take any trial medication.

You can find out more about our Partner Sub-study by visiting the About the Trial Page or reading the Participant Information Sheets.

The screening appointment will include some tests to check if you are able to take part in the trial. These tests will also check if it's safe for you to take all of the research treatments, or only some of them. You will only be given either the placebo or a research treatment that is safe for you to take.

If it's not safe for you to take any of the research treatments, then you will not be able to take part in the trial.

However, you may still be able to take part in the trial in the future:

• Some screening tests can be repeated if the first test results suggest you are not able to take part. This is known as re-screening. If the re-screening result shows you are now able to take part, you will be able to continue in the trial.
• You may be ineligible now, but could become eligible in the future. For example, you may have taken one of the trial treatments recently and would need to wait 6 months before you can take part in the trial.
• As the EJS ACT-PD trial progresses, we plan to add future arms testing more research treatments. These treatments could have different eligibility rules, which means you may be able to take part in the trial in the future.

You can find many opportunities to take part in research by searching the Parkinson’s UK Take Part Hub or the Cure Parkinson’s Get involved with research page.

You can also sign up to the Parkinson’s UK Research Support Network or to the Cure Parkinson’s E-Newsletter for regular updates about research news and opportunities.

If there is any reason why you are not eligible when you register for the trial, you will be notified when you complete your registration form. You will receive an email to confirm this once you have submitted your answers.

If you are eligible when you registered your interest, but later become ineligible whilst waiting to join, you will be contacted by one of your preferred sites to let you know that this has happened.

The team is working with local sites to train and prepare staff. Some sites will be ready quickly, while others will take more time.

The team hopes that all sites will be open and ready by mid 2026. This is the biggest trial for Parkinson’s that has ever been run in the UK, so recruitment will take some time. The team aims to complete recruitment in the next 4 years.

If you have registered for the trial, you will receive an alert to let you know when your selected site is available. You’ll then be invited by a member of staff from your chosen site for an initial screening appointment if your answers suggest that you may be able to take part. If you haven’t heard, there are several reasons why it may be taking some time for your chosen site to get back to you:

• It takes time for hospital sites to open as they need local approval, as well as need to complete set up documents and training to ensure the trial is run safely and correctly.
• Study teams tend to have a limited number of slots for appointments, which need to be split between participants attending follow-up visits as well as screening visits.
• Study staff have other responsibilities, which can limit their availability for trial activities.

However, we are in the process of setting up more new sites across the UK. You can find out which sites are open by viewing the full list of trial sites on the EJS ACT-PD website.

The best way to know you are still being considered:

1. Did you receive an email confirming you are eligible and are on the waiting list to be contacted by your study site when you registered?
2. Are you receiving regular updates from JPR and the trial team about the trial?
3. You have not received any other email from the registration team notifying you that you are no longer eligible.

Unfortunately no. The EJS ACT-PD trial is a multi-centre trial that will take place across approximately 40 NHS trial sites in the UK.

After you’ve submitted the online registration of interest form and your answers suggest that you may be able to take part, when your local site is ready, you will be contacted by a member of the trial team to discuss the trial. This is called a pre-screening call, and the team will ask you some questions to see if you are suitable for the trial. If the trial team thinks you might be able to take part, they will invite you to visit your local trial site for a screening appointment.

When you attend the screening appointment, a member of the trial team will discuss the trial with you again. You can ask them any questions you have about the trial. If you are still happy to take part, you will be asked to sign the consent form.

Once the consent form has been signed, you will be asked to complete the screening tests to check if it's safe for you to take part in the trial. These tests will include a safety blood sample of 10ml (or about 2 teaspoons).

The screening tests will show whether it's safe for you to take part in the trial and whether any treatments are being tested that would not be safe for you to take. If the tests show that none of the treatments would be safe for you to take, you will not be able to take part in the trial.

Before you finish your screening appointment, the trial team will book in a phone call to let you know if you are eligible and advise on the next steps and book a ‘baseline’ appointment with you for between 1 and 4 weeks later.

• You will be randomly allocated to take either one of the trial treatments or a placebo (dummy drug). Neither you nor the local trial team will know which one you have been allocated. You will have an equal chance of being allocated to any of the groups that the tests show you can take part in.
• You will take the trial medication (1 capsule per day) for a maximum of 36 months (3 years).
• You will take the trial medication in addition to your usual Parkinson’s medication.
• You will need to complete 10 trial appointments, plus 3 additional phone calls with the trial team.
• Your first appointment must take place at the hospital or trial site. The remaining 9 appointments can take place from home (online or by telephone) if you prefer.
• At the end of the trial, once analysis is complete, your trial team will contact you to let you know what trial group you were in and what medication you were taking.

The EJS ACT-PD trial also includes substudies that will be offered to participants as part of the trial. These will be important in contributing to the understanding of the trial treatments’ effectiveness.

At all sites, you will be offered:

• Digital measures sub-study - Use of a simple waist-worn sensor device to measure how you move
• Partner sub-study –Available to partners of people with Parkinson’s who take part in the main trial. This will help the trial to understand the impact of providing support for a person with Parkinson’s
• Genetics sub-study - Analysis of your genetic information, in collaboration with another research trial called PD Frontline. Find out more about PD Frontline on the Parkinson’s UK Take Part Hub.

At some sites, you might also be offered:

• Biosamples sub-study - Providing additional blood and/or cerebrospinal fluid samples to look for biological things that could be measured in Parkinson’s

Your site trial team will ask you if you would like to take part in available substudies at your screening appointment. These substudies are optional. It will not affect your participation in the main trial if you do not want to take part in the substudy.

You should read the appropriate information sheets and consent forms for all sub studies before your screening appointment. These will be provided by your local trial site and can be found on the Participant Information Sheet page. You will have the opportunity to ask any questions at the screening appointment.

Yes, you can change your mind about taking part at any point after signing the consent form, and this will not affect your usual care.

You can stop taking part in all of this trial, or in any part of it, at any time and without giving a reason. Your trial team can first advise you about any concerns you may have.

If you decide to stop taking your trial medication, you will be asked if you would be willing to continue with the trial appointments. This is important to monitor your safety and to help us ensure that the results of the trial are reliable, but it is entirely optional.

A decision to stop taking part in any aspect of the trial at any time will not affect your usual care in any way.

EJS ACT-PD will be testing two different treatments at the beginning of the trial. At points during the trial, the team will assess whether the treatment is having an impact on symptoms of Parkinson’s, and whether it's safe to take over a long period. At this point, they may decide to stop a treatment early if it doesn’t look promising.

If your trial treatment arm stops early, you will be told by the trial team. You will be asked to take any of your remaining trial medications to your local pharmacy who will get rid of them safely.

If your trial treatment stops early but you would still like to continue taking part in the trial, you may be able to be allocated to a new trial group. You will need to wait for 6 weeks to make sure there are no problems with stopping your first trial medication. You will then repeat the consent and safety testing process to see if you can still take part in the trial. If you can still take part, you will be randomly allocated again to either a treatment arm or a placebo.

At the end of the trial, participants will not be able to receive any more medication from the trial team. This is because the trial medication is not yet licensed to be prescribed to people with Parkinson’s. If the results show that a trial medication is effective, the EJS ACT-PD team will work hard with the NHS and regulators to make the trial medication available to people with Parkinson’s as soon as possible. However, there are lots of processes and approvals needed before this can happen, and this can take several years.

It's very important that no one tries to get or take the trial medication outside of the trial. This medication is not yet approved for Parkinson’s and needs to be carefully monitored while being taken. Clinical trials provide a safe environment for new medications to be tested, as the trial team will carry out safety checks and monitor any side effects. Taking the trial medication without the trial team's oversight could be dangerous.

If you have any questions or concerns during the trial, you should contact your local trial team, who will be able to help. You do not have to wait until your next appointment to contact the trial team.

All participants will also be given a participant card which includes emergency contact details, including for out of hours contact if there is a trial-related emergency.

You will have a follow-up appointment with their trial team 2 months after you have stopped taking the treatment, to check how you are feeling. After this, there will be no further trial appointments.

The trial team may contact your GP if there is any medical follow-up that needs to be completed after trial medication stops. For example, if while you’re on the trial the team notices a change in your blood pressure, they will notify your GP, who can make sure this is monitored.

You will continue under the care of your usual healthcare team whilst taking part in, and after, the trial.

You can also choose to continue to receive updates from the trial team as the trial carries on.

You will not be able to see individual trial results or assessment scores from the EJS ACT-PD trial or sub-studies. This is because:

• Seeing the results might change how people answer questions, which could affect the trial results.
• If the results are not explained properly, they could be misunderstood or cause confusion.

Details of how your personal information and data is used can be found in the Main Participant Information Sheet (Part 3) which you can find by visiting the Participant information Sheet page.

Participant feedback is really important. There will be two ways for participants to give the trial team feedback:

• There will be an online feedback form where you can provide anonymous feedback on your experience of taking part in the trial.
• Questionnaires will be used at the start, middle, and end of your time taking part in the trial. These questionnaires will ask questions about your experience of taking part in the trial and any substudies.

All feedback will be carefully reviewed to help improve the trial, and the team will provide updates on how feedback has been used in trial communications.

If you have any concerns before or during your time taking part in the EJS ACT-PD trial, you should discuss these with your site trial team. The normal NHS complaints mechanisms are also available to you if you wish to complain or raise concerns about any aspect of the way you have been approached or treated by members of staff in relation to taking part in EJS ACT-PD. This information can be found on the trial Participant Information Sheet, the NHS website, or from your site trial team.

Parkinson’s UK and Cure Parkinson’s are committed to keeping the wider community up to date as the EJS ACT-PD trial progresses. Sign up to the Parkinson’s UK Research Support Network or to the Cure Parkinson’s E-Newsletter for regular updates about research news and opportunities.

JPR@Research+Me aims to connect people with Parkinson's disease to research opportunities. You can choose to also register for JPR@Research+Me when registering for the trial, if you would like to hear more about other research studies in the future. You can visit the Join Parkinson's Research Registry Website or visit the Research+Me Website to find out more. 

It can take a long time to recruit people to take part in clinical trials. It's estimated that fewer than 1 in 10 people with Parkinson’s have taken part in a clinical trial. There are many reasons why it might be hard to join a trial, such as:

• Not having the time to attend appointments or complete assessments
• Not knowing about the trials they could take part in
• Feeling worried or unsure about taking part.

The EJS ACT-PD trial is trying to make it easier for people to join. Some of the ways they’re doing this include:

• Letting participants take part mostly from home if they want to
• Creating a communications plan to let people with Parkinson’s know the trial is happening
• Working closely with people with Parkinson’s to design a trial that is helpful and meaningful to people with Parkinson’s
• Using one pharmacy to handle the trial medication, so that site teams don’t have to
• Providing extra staff in some locations to help sites run the trial.