As a care partner it can be a lonely place to be, watching a loved one deteriorating in front of you is just heartbreaking. I too can not believe that there has been do little progress in the treatment for this awful condition.
The frustrating reality about Parkinson's (and Alzheimer's and Motor Neurone Disease and ...) is that, despite decades of research by smart and well-meaning scientists, we still don't actually understand what's going on; what, at a biochemical level, is really happening in the brain. I think until we properly understand the condition, then all of the drug trials are speculative, hence we're always 5 years away from getting lucky and one of them working.
I do think, however, that Prof Barker's cell replacement therapy offers a potential alternative. If you can't stop the neurons from dying, just replace them with some new ones. Fingers crossed on the current batch of trials...
Privacy need not be an impediment to establishing a registry. Privacy is your friend when establishing a registry because it aims to embed privacy in the design. Enlist privacy professionals to get it done!
Also worth asking your local PD service if they keep a list of patients interested in research participation. Some NHS trusts, especially those that are very research active, do maintain a local register so that they can alert their patients to opportunities to take part in trials and other research projects.
I work in Diabetes Research and I think Diabetes UK keeps a register of people willing to enter trials, certainly my dept in Oxford have a list of people happy to be approached. Should be possible to do this in Parkinson's - worth talking to Parkinson's UK. The privacy issues can be sorted.
There are very tough issues about going through electronic medical records and emailing everyone with a condition to ask if they would like to take part in research.
The time it takes to recruit could be limited by staffing in study centres - it could take a morning to screen a possible trial participant and then have the time and space and facilities to see them regularly. I speak from having been the statistician on a trial that had 5102 people with newly diagnosed Type 2 diabetes who were seen every 3 months (eventually changed to 4 months), median follow-up 10 years. Each clinic in our centre (about 300 patients) had 3 doctors, 3 nurses, a medical photographer, dietician, foot specialist every Thursday morning for over 20 years.....
There are so many conditions and so much research that takes so, my concern is the past impacts of the pandemic and the future impacts of collaboration following Brexit.
Your last paragraph is so true, hope is an amazing thing for so many. Not giving up!
As a care partner it can be a lonely place to be, watching a loved one deteriorating in front of you is just heartbreaking. I too can not believe that there has been do little progress in the treatment for this awful condition.
What about buntanetap by Annovis Bio?
The frustrating reality about Parkinson's (and Alzheimer's and Motor Neurone Disease and ...) is that, despite decades of research by smart and well-meaning scientists, we still don't actually understand what's going on; what, at a biochemical level, is really happening in the brain. I think until we properly understand the condition, then all of the drug trials are speculative, hence we're always 5 years away from getting lucky and one of them working.
I do think, however, that Prof Barker's cell replacement therapy offers a potential alternative. If you can't stop the neurons from dying, just replace them with some new ones. Fingers crossed on the current batch of trials...
Privacy need not be an impediment to establishing a registry. Privacy is your friend when establishing a registry because it aims to embed privacy in the design. Enlist privacy professionals to get it done!
Worth remembering that patients / carers can search for relevant trials at https://bepartofresearch.nihr.ac.uk/
Also worth asking your local PD service if they keep a list of patients interested in research participation. Some NHS trusts, especially those that are very research active, do maintain a local register so that they can alert their patients to opportunities to take part in trials and other research projects.
I work in Diabetes Research and I think Diabetes UK keeps a register of people willing to enter trials, certainly my dept in Oxford have a list of people happy to be approached. Should be possible to do this in Parkinson's - worth talking to Parkinson's UK. The privacy issues can be sorted.
There are very tough issues about going through electronic medical records and emailing everyone with a condition to ask if they would like to take part in research.
The time it takes to recruit could be limited by staffing in study centres - it could take a morning to screen a possible trial participant and then have the time and space and facilities to see them regularly. I speak from having been the statistician on a trial that had 5102 people with newly diagnosed Type 2 diabetes who were seen every 3 months (eventually changed to 4 months), median follow-up 10 years. Each clinic in our centre (about 300 patients) had 3 doctors, 3 nurses, a medical photographer, dietician, foot specialist every Thursday morning for over 20 years.....
There are so many conditions and so much research that takes so, my concern is the past impacts of the pandemic and the future impacts of collaboration following Brexit.
Your last paragraph is so true, hope is an amazing thing for so many. Not giving up!