Now that 2014 has arrived, this is a good time to reflect on 2013 and what we have been achieved. And it was a really busy and productive year for research at Parkinson’s UK. So, here are some of the highlights of what we have achieved.
1. We funded over £5million in research grants
This was our highest amount that we have ever spent on research grants in a single year. It included project grants, innovation grants, career development awards and PhD studentships. All of these were rigorously scrutinised by external review and represent the highest quality cutting-edge research. Further details of the grants awarded can be found on the research website. This brings our total spend on research to over £65million since the charity started.
2. Our GDNF clinical study got underway
Clinical studies carried out almost ten years ago suggested that the Glial Derived Neurotrophic Factor (GDNF) protein may have a protective effect against Parkinson’s and may even reverse its progression by stimulating nerve cells to regrow. However, there were problems with the initial trial design and the drug was withdrawn. In 2012, Parkinson’s UK teamed up with Medgenesis, the North Bristol NHS Trust, and the Cure Parkinson’s Trust to design a new clinical trial. NBT have been working to develop a new way of delivering the GDNF into the part of the brain affected by Parkinson’s and Medgenesis are providing the drug for the trial. An initial three month trial with six participants took place in the first half of 2013. This was to ensure that the procedure was safe and that the GDNF was being administered to the correct part of the brain at the appropriate concentrations. Following the success of this “safety phase”, a full study involving 36 participants has now started with people currently being recruited. The study will last 18 months and further details can be found on the Parkinson’s UK website.
3. Participation in clinical trials
Parkinson’s UK is funding two long-term studies of people with Parkinson’s. This involves the recruitment of people who have been diagnosed within the last three years and following the progression of their condition over time. This will help us to really understand how Parkinson’s progresses, how we can diagnose it more accurately at an earlier stage and what the best medications are. Tracking Parkinson’s is the largest study of its kind in the world and aims to recruit 2,400 people with Parkinson’s and 600 first degree relatives (brothers and sisters). Recruitment is taking place at over 50 centres throughout the UK and already we have recruited over 1,800 participants. As part of the Monument Discovery Award, we are recruiting over 1,200 people from the Thames Valley region in a parallel study. The first results from this study have recently been published and these reported age and gender differences in symptoms as well as providing information on non-motor symptoms. We are now working to make the data available to researchers worldwide so that the best use can be made of it.
We have also helped to recruit over 1,300 participants without Parkinson’s for the PRECICT-PD study. This has used changes in the sense of smell as well as finger tapping tests to identify people who may be at higher risk of developing Parkinson’s. These people will then be followed over time to see who may develop Parkinson’s and this information will be key to our identifying people at risk of developing the condition more accurately and at an earlier stage. This research is being carried out by Dr Alastair Noyce who holds one of our career development awards and demonstrates our commitment to investing in the brightest young researchers. The initial results of the study have now been published.
Parkinson’s UK also provides details of current research projects within the UK in which people can take part. These include both clinical and non-clinical research. We are approached on a regular basis by researchers who want to recruit volunteers. We can play a key role by connecting researchers with study volunteers. There are 21 trials currently recruiting and listed on our website.
4. Identifying biomarkers of Parkinson’s
If we are to make an early and accurate diagnosis of Parkinson’s, we need to have reliable “biomarkers” – indicators that somebody has Parkinson’s. These will complement the clinical evaluations that are used primarly at present. One way is to develop a blood test where changes specific for Parkinson’s can be identified. We invited applications from researchers worldwide to submit a proposal to use the technique of proteomics to develop blood markers. After receiving 27 applications from 12 countries, the contract was awarded to Prof Simon Lovestone who has used a similar approach for the study of Alzheimer’s. We have also awarded a large grant to a group at the University of Nottingham to develop new sensitive scanning techniques to help improve our diagnosis of Parkinson’s. Both of these will involve people who have been enrolled into our Tracking and Discovery cohorts.
5. New uses for old drugs
The development of new drugs is extremely expensive and there are a lot of failures. In 2013, less than 40 new drugs were approved for use in Europe. So, it would be much cheaper and more efficient to use an existing drug to treat another condition (called repositioning or repurposing). Parkinson’s UK funded research a few years ago to suggest that exenatide, a drug used to treat diabetes, may help to slow down the development of Parkinson’s using an animal model. Based on these findings, a small clinical trial suggested that this may also be the case in man and a larger study is now underway. Another project funded by Parkinson’s UK using skin cells from people with Parkinson’s screened 2,000 existing drugs and found that at least one with particular promise called ursodeoxycholic acid (or UDCA). This is a drug used for decades to treat certain forms of liver disease. And we have awarded a career development award to Dr Heather Mortiboys at the University of Sheffield to continue this work.
6. Involvement of people with Parkinson’s
Everything that we do is driven by the needs of people affected by Parkinson’s and it is key that they play an integral part in our research programme. In addition to participation in clinical trials, there are many more ways in which people can become involved in research. Our Research Support Network is a group of over 800 members who have a particular interest in research. Some, for example, help to assess our research grant applications. Others visit our researchers to discuss their researchers while there are also opportunities for people to sit on project steering groups and really shape the research at an early stage. And we regularly host events to which members of the public can come along.
6. Communicating the impact of our research
While it is vital that we continue to fund the highest quality research, it is also important that we ensure that our research is making a real difference, either in the shorter or longer term. In addition to providing us with regular updates on their progress which are rigorously assessed, all of our researchers are required to provide us with details of publications arising from their research, other research funding that arose from work that we funded and other tangible outcomes. We have put this together in a short cartoon video which highlights our outputs as well as in a pictorial form. We also use a variety of communications channels to publicise both the research that we are funding as well as other key discoveries in the field. These include the Parkinson’s UK website, our research magazine Progress, the research pages of The Parkinson magazine, Synapse (our researchers’ newsletter), twitter, facebook and others. It is vital that we keep people updated on all that we are doing and achieving.
7. Our wider influence
In addition to the research that we fund, Parkinson’s UK has had a particular influence within the wider research arena in 2013. Through our active campaigning strategy, we have served as the voice of Parkinson’s research both within the UK and in Europe and we represent people with Parkinson’s at many levels. Our Chief Executive Steve Ford attended the G8 summit on dementia to highlight the importance of dementia for people with Parkinson’s. We are also represented on external bodies such as the Executive Council of the Association of Medical Research Charities, the Medical Research Council Brain Bank Steering Committee and the Parkinson’s Clinical Study Group of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN). We are frequently invited to attend Parliamentary and other events to promote Parkinson’s research and lobby for increased levels of funding. One of the highlights of the year was the invitation to speak at the Partnering for Cures meeting in New York in November. we were the only European charity presenting and it gave us an opportunity to showcase our research to other research funders and to industry. In particular, we stressed the importance of sharing clinical trial data and this will be a key priority for us in 2014. You can see our presentation here.
8. Looking forward to 2014
There is a lot planned for 2014. In addition to funding new research, we will continue to support our brain bank, the Tracking and Discovery cohorts as well as involving people in research at all levels. As part of this, we have launched a survey to help us identify the top 10 unanswered questions in Parkinson’s research. In addition to helping us to design our 2015-19 research strategy, we will also be able to campaign for the funding of specific areas of research which have been identified by people affected by Parkinson’s in collaboration with healthcare professionals. There will be more announcements of research initiatives and developments and you can catch up with all of our research news on our website.