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.
Opportunities to participate typically come in one of three formats: –
- 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 a Study Centre. Drug trials almost always require visits, maybe several, to the Clinic or trial Study 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. Some of us keep our 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.
The Parkinson’s UK post code search will also find research activities taking place near you, or indeed anywhere else in the UK.