Getting Involved


Introduction

Our aim is to encourage you to participate in research activities. They may depend on your participation in person – someone coming to see you, or you going to see them. The telephone, email, or filling in a web form may be the method. Any participation makes a contribution and is appreciated by the research community.

This section of the website introduces the diferent ways you can be involved. We offer some insights into the research methods you may encounter and the personal impact of participation.

The current opportunities for local involvement are summarised in the Index.

The Parkinson’s UK post code search will also find research activities taking place near you, or indeed anywhere else in the UK.

Who, Me?

You may be apprehensive, believe that you have nothing to offer, or even simply not want to know.  Be open to the possibility that you will gain from the experience and others will benefit.

Coming to this site was your first step, because it means that you have Parkinson’s a while ago. You may now be noticing its impact on daily life or wondering about how it might progress. If you have a family history there is a distinct possibbilty of a genetic connection. If you have an idiopathic diagnosis, you will have no idea what causes it – because no-one does for sure.

These topics and many more are the daily business of research, and we all have information to offer to the research community.  You or a family member may have concerns about research participation. These are usually rooted in hearsay or lack of information.

Your final step forward is to wanting to be involved. My own experience is that this will come to you some time after diagnosis, although some are immediately motivated to roll up  their sleeves.

This is a good summary from Annie Amjad of Parkinson’s UK about Involvement in Pre-Clinical Research.

Why Should I?

The investment you put into research participation will benefit you directly and others indirectly. What you do and how much you do is up to you and your circumstances.

.You do not need to know much about the disease to make a useful contribution. Many keep their distance, taking it “one day at a time”. Others, perhaps because of their work and skills, will dive deep. A better understanding of Parkinson’s enhances the contribution you make. Our somewhat cryptic advice is that you cannot unlearn and you may not be able to forget. Think carefully about the “need to know” on behalf of yourself and those around you. You can:

      • Contribute information about your condition and your views, without delving into the science. You will find the effort put in to an activity such as a questionnaire or a group discussion rewarding.
      • Contribute YOURSELF to the research effort. Be involved in clinical trials. Something may have caught your eye in a publication as being relevant to your symptoms. This will lead into understanding Parkinson’s beyond the names of your prescription drugs, which is the typical limit of knowledge.
      • Contribute to PenPRiG!  Not money, rather your time, effort and skills to promote interest in research.

Share Your Story

First up is the UK Exenatide drug re-purposing Trial, recounted by Ulli Funken