People With Parkinson’s become People Who Participate
The brain is by far our most complex organ. Our grasp of how it works is unfinished business, not least because of our limited understanding of how and why it can fail in service.
For most of its history as a medical discipline, Neurologists have been constrained to observation of live subjects and examination of dead ones. For researchers, animal models of the diseases generate knowledge, but often prove not to be a proxy for the human condition.
Technology and money are now bringing big changes in the understanding of Parkinson’s and to the possibilities for treatment. The rapidly expanding pipeline of potential treatments includes managing symptoms, arresting decline, and reversing the effects. Nevertheless, around 80% of diagnoses have no known cause (this is “Idiopathic Parkinson’s”), and a definitive diagnosis can only be given after death.
The realisation that Parkinson’s may be a family of related but different conditions (“heterogeneity” in research parlance) adds significant complications to development and testing. By the time observation begins, the condition has already wrought considerable damage. Taken together these factors are driving the development of biomarkers to find the condition before it’s seen or felt, and to provide accurate measurements of the various symptoms.
These treatments must be tested in a strict regime, and all of them need participants. Investigation of biomarkers needs participants. The effort to understand the complexity of the disease in its presentation and genesis needs data – lots of data. This comes from participants. The need for people with Parkinson’s and those around them to participate in research is very clear.
The current opportunities for local involvement are summarised in our Index. The Parkinson’s UK post code search will also find research activities taking place near you, or indeed anywhere else in the UK.
For those coming to this site in search of information about Parkinson’s Disease we provide links in Research Articles to (in our opinion) the most dependable and readable sources.
Our aim is to encourage you to participate in research, and we can do so without the ethical and legal barriers that rule out promotion – even the suggestion – of (e.g.) a drug trial by the medical profession. However, we recognise that we encourage in ignorance of people’s situation; the decision to participate is yours. In this section we introduce the different ways in which you can be involved. We offer some insights into the research methods you may encounter, and the personal impact of participation.
To those who are apprehensive or believe you have nothing to offer, we say be open to the possibility that you will gain from the experience and others will benefit. You or a family member may have concerns about research participation; these concerns are usually rooted in hearsay or lack of information. We categorise opportunities to participate in three ways:
- At Home. Typically based on an emailed questionnaire or filling in a website form. Sometimes we can influence the research method to include printed material for those without access to the internet. Some studies may be handled in a personal interview at home.
- Home and/or Away. Studies may be offered as a home visit or a trip to a study location or a combination of both. Straightforward medical procedures may be included (swabs, samples).
- Away Visit(s) to Study Centres. Drug trials always require visits, maybe several, to the Clinic or Trial Centre. The majority of “local” trials currently are conducted at Derriford Hospital.
A Word Of Caution
You do not need to know much about Parkinson’s to be able make a useful contribution. Many Studies simply ask you to report what is happening to you. Many keep their distance from this knowledge, taking it “one day at a time”. Others, perhaps because of their work situation and skills, will dive deep. A better understanding of Parkinson’s enhances the contribution you can make. However, bear in mind that you cannot unlearn knowledge and you may not be able to forget experiences. Think carefully about the “need to know” on behalf of yourself and those around you.
Share Your Story
First up is the UK Exenatide drug re-purposing Trial, recounted by Ulli Funken