The Cure Parkinson’s Action Group (CPAG) is a new initiative spearheaded by the trustees of Parkinson’s UK. The objective for this group is to bring together people with different interests in Parkinson’s research (including academics, charities and drug companies) in order to develop a co-ordinated strategy. So that this is informed by people living with Parkinson’s two members of the Research Support Network, Mary Brightwell and Richard Windle, were invited to join the CPAG steering group. The first meeting was held November 2011 and the discussion focussed on clinical trials where there are a number of shortcomings in the current regulatory system:
Patient output measures: What constitutes a successful trial? The current criteria are too stringent and drug companies may be put off carrying out trials.
Time to develop treatments: A trial involves a number of different stages and if some of these can be combined the trial may be completed sooner, without compromising safety.
Better sharing of data: This involves patient data from GPs (without compromising confidentiality) and research data from academics (who may be too focussed on their own specialist areas of research.)
Patient involvement: There is a movement developing whereby people with Parkinson’s not only take part as the subjects of research, but are also involved in the research process to help design and assess the effectiveness of trials. We think this is to be encouraged.
Access to trials: It will be possible to increase the pool of people who are available to take part in trials if there can be better matching of researchers and people with Parkinson’s. This will need to involve GPs and consultants.
Drug repositioning: Trials of drugs that were developed for the treatment of another disease (eg. diabetes) that have also been shown to be effective in the treatment of Parkinson’s.
The next meeting, which is in February, will progress plans to overcome some of the barriers identified above. This will involve both information and lobbying campaigns. The recent dinner at the House of Lords (see link to the post on the Parkinson’s UK research forum below) is one example of lobbying, but most of the work will be behind the scenes.
The two of us, as volunteers, felt that, though it was a steep learning curve, we both learnt a great deal from the experts at the meeting. Going forward we hope that, as representatives of those living with the condition, we will have a valued and essential part to play in the success of CPAG.