Jayne Calder thought her husband had helped find the closest thing yet to a cure for Parkinson’s, but researchers didn’t agree.
By Jayne Calder
In 2013, my husband Darren took part in the Phase 2 GDNF trial. This ground-breaking trial involved implanting a novel delivery system into the brain to infuse a protein periodically in a clinical setting and involved 42 participants.
The protein named Glial Derived Neurotrophic Factor was to be checked for disease modifying capability. It is well documented that there was a huge gap between the scientific findings and the patient experience from receiving GDNF. The documentary, “The Parkinson’s Drug Trial: A Miracle Cure?,” which followed the process of this trial evoked great emotion from the world of people living with Parkinson’s.
One of the participants, Vicki DIllon, experienced a 63 per cent improvement of her symptoms, and on PET scans, all the participants showed potential for reawakening and restoring damaged brain cells, but the trial did not meet its primary endpoint.
I think that is ridiculous.
Darren’s symptoms improved more than 50 per cent while on GDNF. Without any doubt whatsoever, in 100 per cent of those participants’ minds, we have got the cure for Parkinson’s.
Recruiting for the next round of GDNF trials was scheduled to begin in early 2021. The CEO of Parkinson’s UK, Steve Ford, shares in an email with PD Avengers, “We remain very interested in supporting further studies to explore the potential of GDNF and we’re continuing to work with the relevant parties, including previous participants, to find a path forward. As yet there is no finalised plan for a new trial funded by Parkinson’s UK. If and when this changes we’ll be keen to share this widely with the Parkinson’s community and keen to work with you to do so.“
“We remain very interested in supporting further studies to explore the potential of GDNF and we’re continuing to work with the relevant parties, including previous participants, to find a path forward.”Steve Ford, CEO Parkinson’s UK
I truly believe that when they get the next GDNF trial off the ground, if they apply the learnings from the last trial alongside the participant’s evidence, the results will indeed prove that GDNF is that wonder drug we think it is. I have seen the evidence in Darren. I know i my heart and have seen with my eyes that GDNF holds restorative brain cell properties, which improves the quality and symptoms of those suffering from Parkinson’s.
Some of the big questions that emerged after Darren’s GDNF trial was about the trial design. As a result, many of the participants who took part in the trial have formed an action group to both raise awareness of our belief in the benefits of GDNF and to share our experience of participating in this unique trial.
“Why would we do that? Have you not been through enough?” Quite frankly the answer is NO!
Most of the participants would volunteer again for the next GDNF trial if they could, because they are the ones who truly understand the improved quality of life it gave them.
In future the patient feedback must be acted upon, taken as part of the measurement of trial success, so that the evidence capturing tools will be fit for purpose. Patients can no longer be participants in trial, they must be considered equal partners. The patient voice must be central from the very beginning and every step from the planning stages to post trial care. Needs of the patient partners must be anticipated and tended to with urgency.
For instance, in Darren’s trial, there was little counseling before, during or after the trial and what was offered was viewed as an after-thought. Think about that. These people volunteered for experimental brain surgery, with an experimental device and an experimental drug and then experience the magical effects of this raindrop-sized protein pumped directly into his brain, only for the trial to fail. And there was minimal psychological support offered.
One objective of the PD Avengers is to “improve meaningful patient input at every step of therapeutic development.”
There are promising therapies in the pipeline for PD, however all require extensive evaluation in clinical trials and almost 80% of these studies fail to meet their targets for recruitment.
“Success is not final, Failure is not fatal, it is the courage to continue that counts.”Winston Churchill
“We cannot get closer to having better therapies or finding a cure for Parkinsons without broad and enthusiastic participation from the Parkinsons community.”Ending Parkinson’s Disease book
RESOURCES FOR GDNF:
GDNF: The Ongoing Controversy: https://pdavengers.eu/?page_id=534
WEBSITE: The GDNF Journey
SUPPORT: THE GDNF Unifying Challenge
CURE PARKINSON TRUST: GDNF Trial Results Published
Watch this video and download this inspirational song called “Shine” written for the GDNF Participants by Rick Taylor. The words are so relevant and the video was put together by Vicki Dillon who took part in the GDNF trial.