Medical research takes years. Thats a given. But at least let participants know whether they were given the drug or a placebo. Then, for the love of God, if it looks like the drug can help, in any way, please get it going to save the physical and mental health of the patients.
Those conducting Parkinson’s research in the UK do not inspire faith. From personal experience I doubt they could organise the proverbial “party” in a brewery!
My Consultant in Oxford said I would be an ideal candidate for research into the effects of a Keytone esther drink on PD symptoms when I first saw her four years ago. I emailed the person I was told to contact at the trial and explained this. I was sent dozens of forms by email and post which I duly filled in and returned. I heard nothing for ages and was sent the same forms again some months later. I completed and returned these explaining that I had completed and returned the same forms to them some months previously. I heard nothing. Two years later - at a Parkinson’s event I met someone who had taken part in the study. He had no idea what the study outcome had been!
Excited to hear about the potential of Ambroxol in early 2023 I signed up for PD Frontline. I was quickly sent a kit to collect my saliva for genetic testing. I provided the sample as instructed and posted it back to UCL in the envelope provided in early February 2023. I also filled in endless forms on line and after doing this received at least two generic emails asking me to fill them in again!
I have chased for the results of my genetic test twice (once after receiving another email asking me to do a genetic spit test and offering to send me the kit again!) and both times have received a very polite but totally in informative email telling me there have been unexpected delays and that these things take a long time but I would get the results of my genetic test soon. More than 20 months after providing the sample I have given up hope of ever finding out from PD Frontline whether I carry the genes specific to Parkinson’s and doubt whether the phase 3 Ambroxol trial will ever get underway.
I have been more than willing to give my time and energy to participate in research and have completed endless forms and emails which seem to have disappeared into the ether. I feel completely let down by the scientists allegedly conducting the research. They could not make me feel any less important or regarded and I am thoroughly depressed that my future well being is in their hands!
I too am a participant of the Exenatide trial and, like Alison, was enrolled at a very early point, which has meant that I have been waiting endlessly for the results.
Like Alison, I felt that my PD did not deteriorate significantly while I was on the trial and even for a period after my active involvement ended, but like all people with Parkinson’s I am aware that my functioning is getting worse, while the researchers seemingly have no sense of urgency.
Meanwhile, the Times on Saturday was headlining with news that semaglutide (another GLP-1 receptor agonist ) “can slow down ageing “ as it seems to combat inflammatory process.
What use is a ‘Thank you’ card? The best thanks would be to give us a positive result and make sure that we can get the drugs quickly.
To be absolutely fair my one very positive experience of participating in research has been with the team running the OxQuip trial at the John Radcliffe in Oxford. Their communication has been excellent (thanks to the fabulously well organised and very personable Brenda Cooley). They also have a patient participation group which I have taken part in and it is clear that views expressed in this group have been taken account of and acted upon.
The OxQuip trial is looking at more effective ways to measure and track the progression of Parkinson’s symptoms rather than testing potential new drug treatments.
Other research projects could definitely learn about effective communication and participant organisation from those running the OxQuip trial.
I agree Vicky , I was based at Oxford JR. organisation and communication was excellent whilst I was actively on the trial, taking the drug until final sign off two years ago. All 200 participants completed the trial by Early 2024, the data closed after being cleaned.
Responsibility has now passed back to UCL, not Oxford . Communication is poor, impersonal and gives no-useful information. . Promised newsletters don’t happen. There is no commitment to any date for any action!. I have not been given a contact name despite injecting myself for two years for the project. Not acceptable.
I was on the Exenatide Trial, based at Oxford from 2021-October 2023. I agree with Alison completely in feeling my PD didn’t deteriorate throughout that period but within 2 months of completing the trial I experienced a worsening of several symptoms and the addition of quite a few others over a relatively short period of time :( Convinced I was on Exenatide but no evidence to support that of course. Just desperately keen to hear the trial results 🤞Didn’t;t receive a Thank You card !🤣
I wonder if the trials had a public and patient involvement group (PPI). Such groups work with research teams to ensure the work is accessible, relevant and addresses the needs of and things that matter to the patients .
I was on the Ambroxol Phase 2 trial back in 2016. The trial was described to me as "proof of concept": the drug is readily available as a decongestant in Europe, over the counter - they wanted to see if it could be tolerated at a much higher dose and whether it crossed the blood/ brain barrier, hence three lumbar punctures.
It was a 6-month trial. There was no placebo so I realise that a pinch of salt is needed when I say that for me it completely got rid of my tremor, which at the time was pretty much my only symptom.
We were thanked - though no, greetings card, I think - then we waited for the Phase 3 trial. And waited. Here's an impatient blog I wrote in January 2020. https://wp.me/p2QPBZ-1jy
Understandably, everything ground to a halt in the pandemic. Since then, there have been meetings about the Phase 3 trial, I have been asked from time to time about my experience of being on Phase 2 but nothing has happened. People have been encouraged to register an interest in the trial but nothing has happened. It has been spoken about at The Cure Parkinson's update and meetings, and is constantly on the verge of starting but nothing has happened.
My very real quandary is whether to source the drug myself and start taking it. It is available in France, one can readily get it by post from a company which seems to be pretty much the French equivalent of Barrett and Holland. In order, though, to take it at the dosage of the Phase Three trial - 1260mg a day - you need boxes and boxes of the stuff: it appears only to be available in 30 milligrams doses.
When people have asked in the past whether I had considered sourcing the drug privately, I have always said I would rather it go through a proper trial and then would be available to everyone. But as someone said in the comments above, the trial still hasn't started and it appears that I've had Parkinson's too long to be eligible if and when it does start.
It also goes against the grain to take a drug that hasn't been approved in the UK.
It is very, very frustrating. The people at The cure Parkinson's trust, who are the main funders for this trial, are really lovely but something isn't right here.
As a very impatient patient, I genuinely don't know what to do.
I participated in the Buntanetap Phase 3 trial. Same story. It is been over 19 months since I finished my last dose and NOTHING. Annovis, the company that conducted the trial has NOT done the open label followup study they promised. Participants have NOT been told whether we got placebo or active. And I have given up on asking the company for an update. I don't know if Buntanetap for Parkinson is not effective or if Annovis just made such a hash of the trial that the data is unusable.
But that was a huge personal effort for me to travel six hours every month for six months to participate. I did it because we are desperate for new drugs that can slow down or stop this disease. And yet there is no new data for the fight against Parkinson from this trial.
Cure Parkinson UK does amazing work and I hesitate to criticise them. But I thought the UDCA trial end was very underwhelming. They did a webcast. There has still not been a proper paper published and it is not that clear whether there was signal or not? Was the trial designed properly - or did the UDCA not really work? Normally there are sub-groups with better results for example. With the UDCA trial we just don't know.
So I hope Dr. Foltynie will do better and SOON on Exenatide.
Meanwhile, thank you for a good piece of investigative journalism,
Medical research takes years. Thats a given. But at least let participants know whether they were given the drug or a placebo. Then, for the love of God, if it looks like the drug can help, in any way, please get it going to save the physical and mental health of the patients.
Those conducting Parkinson’s research in the UK do not inspire faith. From personal experience I doubt they could organise the proverbial “party” in a brewery!
My Consultant in Oxford said I would be an ideal candidate for research into the effects of a Keytone esther drink on PD symptoms when I first saw her four years ago. I emailed the person I was told to contact at the trial and explained this. I was sent dozens of forms by email and post which I duly filled in and returned. I heard nothing for ages and was sent the same forms again some months later. I completed and returned these explaining that I had completed and returned the same forms to them some months previously. I heard nothing. Two years later - at a Parkinson’s event I met someone who had taken part in the study. He had no idea what the study outcome had been!
Excited to hear about the potential of Ambroxol in early 2023 I signed up for PD Frontline. I was quickly sent a kit to collect my saliva for genetic testing. I provided the sample as instructed and posted it back to UCL in the envelope provided in early February 2023. I also filled in endless forms on line and after doing this received at least two generic emails asking me to fill them in again!
I have chased for the results of my genetic test twice (once after receiving another email asking me to do a genetic spit test and offering to send me the kit again!) and both times have received a very polite but totally in informative email telling me there have been unexpected delays and that these things take a long time but I would get the results of my genetic test soon. More than 20 months after providing the sample I have given up hope of ever finding out from PD Frontline whether I carry the genes specific to Parkinson’s and doubt whether the phase 3 Ambroxol trial will ever get underway.
I have been more than willing to give my time and energy to participate in research and have completed endless forms and emails which seem to have disappeared into the ether. I feel completely let down by the scientists allegedly conducting the research. They could not make me feel any less important or regarded and I am thoroughly depressed that my future well being is in their hands!
I too am a participant of the Exenatide trial and, like Alison, was enrolled at a very early point, which has meant that I have been waiting endlessly for the results.
Like Alison, I felt that my PD did not deteriorate significantly while I was on the trial and even for a period after my active involvement ended, but like all people with Parkinson’s I am aware that my functioning is getting worse, while the researchers seemingly have no sense of urgency.
Meanwhile, the Times on Saturday was headlining with news that semaglutide (another GLP-1 receptor agonist ) “can slow down ageing “ as it seems to combat inflammatory process.
What use is a ‘Thank you’ card? The best thanks would be to give us a positive result and make sure that we can get the drugs quickly.
To be absolutely fair my one very positive experience of participating in research has been with the team running the OxQuip trial at the John Radcliffe in Oxford. Their communication has been excellent (thanks to the fabulously well organised and very personable Brenda Cooley). They also have a patient participation group which I have taken part in and it is clear that views expressed in this group have been taken account of and acted upon.
The OxQuip trial is looking at more effective ways to measure and track the progression of Parkinson’s symptoms rather than testing potential new drug treatments.
Other research projects could definitely learn about effective communication and participant organisation from those running the OxQuip trial.
I agree Vicky , I was based at Oxford JR. organisation and communication was excellent whilst I was actively on the trial, taking the drug until final sign off two years ago. All 200 participants completed the trial by Early 2024, the data closed after being cleaned.
Responsibility has now passed back to UCL, not Oxford . Communication is poor, impersonal and gives no-useful information. . Promised newsletters don’t happen. There is no commitment to any date for any action!. I have not been given a contact name despite injecting myself for two years for the project. Not acceptable.
I was on the Exenatide Trial, based at Oxford from 2021-October 2023. I agree with Alison completely in feeling my PD didn’t deteriorate throughout that period but within 2 months of completing the trial I experienced a worsening of several symptoms and the addition of quite a few others over a relatively short period of time :( Convinced I was on Exenatide but no evidence to support that of course. Just desperately keen to hear the trial results 🤞Didn’t;t receive a Thank You card !🤣
Sounds like some funny business going on. The response sounds like a lot of word salad.
I wonder if the trials had a public and patient involvement group (PPI). Such groups work with research teams to ensure the work is accessible, relevant and addresses the needs of and things that matter to the patients .
Thank you for this update of sorts. You captured the frustration perfectly.
I was on the Ambroxol Phase 2 trial back in 2016. The trial was described to me as "proof of concept": the drug is readily available as a decongestant in Europe, over the counter - they wanted to see if it could be tolerated at a much higher dose and whether it crossed the blood/ brain barrier, hence three lumbar punctures.
It was a 6-month trial. There was no placebo so I realise that a pinch of salt is needed when I say that for me it completely got rid of my tremor, which at the time was pretty much my only symptom.
We were thanked - though no, greetings card, I think - then we waited for the Phase 3 trial. And waited. Here's an impatient blog I wrote in January 2020. https://wp.me/p2QPBZ-1jy
Understandably, everything ground to a halt in the pandemic. Since then, there have been meetings about the Phase 3 trial, I have been asked from time to time about my experience of being on Phase 2 but nothing has happened. People have been encouraged to register an interest in the trial but nothing has happened. It has been spoken about at The Cure Parkinson's update and meetings, and is constantly on the verge of starting but nothing has happened.
My very real quandary is whether to source the drug myself and start taking it. It is available in France, one can readily get it by post from a company which seems to be pretty much the French equivalent of Barrett and Holland. In order, though, to take it at the dosage of the Phase Three trial - 1260mg a day - you need boxes and boxes of the stuff: it appears only to be available in 30 milligrams doses.
When people have asked in the past whether I had considered sourcing the drug privately, I have always said I would rather it go through a proper trial and then would be available to everyone. But as someone said in the comments above, the trial still hasn't started and it appears that I've had Parkinson's too long to be eligible if and when it does start.
It also goes against the grain to take a drug that hasn't been approved in the UK.
It is very, very frustrating. The people at The cure Parkinson's trust, who are the main funders for this trial, are really lovely but something isn't right here.
As a very impatient patient, I genuinely don't know what to do.
I participated in the Buntanetap Phase 3 trial. Same story. It is been over 19 months since I finished my last dose and NOTHING. Annovis, the company that conducted the trial has NOT done the open label followup study they promised. Participants have NOT been told whether we got placebo or active. And I have given up on asking the company for an update. I don't know if Buntanetap for Parkinson is not effective or if Annovis just made such a hash of the trial that the data is unusable.
But that was a huge personal effort for me to travel six hours every month for six months to participate. I did it because we are desperate for new drugs that can slow down or stop this disease. And yet there is no new data for the fight against Parkinson from this trial.
Cure Parkinson UK does amazing work and I hesitate to criticise them. But I thought the UDCA trial end was very underwhelming. They did a webcast. There has still not been a proper paper published and it is not that clear whether there was signal or not? Was the trial designed properly - or did the UDCA not really work? Normally there are sub-groups with better results for example. With the UDCA trial we just don't know.
So I hope Dr. Foltynie will do better and SOON on Exenatide.
Meanwhile, thank you for a good piece of investigative journalism,
Nina