I recently attended a Conference in London organised by DENDRON (Dementias & neurodegenerative diseases research network). It was a National PPI (patient and public involvement) forum for lay people like me who are involved. I became interested as someone who has Parkinson's. I have only been to one conference before and would like to share part of this with others on the forum.
DENDRON support the development, set up and delivery of clinical research in the NHS in dementias, Huntingdon's, motor neuron, Parkinson's and other neurodegenerative diseases. DENDRON are keen to find out how to contact more people who would consider becoming involved in research. It can be difficult for researchers to attract patients and for patients to find out about research they would wish to become involved in.
I became involved as I am interested in finding out more about my condition and I feel the role of research and its support is so important for everyone with such a disease. Parkinsons UK were also represented.
It was a very pleasant day, even though the subject matter is serious, there was a very supportive atmosphere, the majority of those attending being lay people. The chair (also a lay person) managed to invoke quite a lot of laughter to the proceedings.
The main speaker was Professor Huw Morris, speaking about his own research and how genetic testing affects this. This was very interesting and presented in terms we could understand.
The day consisted of short discussions on related topics that would be fed back to the main hall. In the afternoon there were several workshops. I chose to attend one "Emotional safety for lay people and ethics of PPI. It was a very informative day as well as that we were also well fed and watered.
If anyone thinks they might be interested in finding out more about
DENDRON then do look at their website. I did wonder "what do I have to offer to something like this" but by attending these meetings have realised that the most important thing I have to offer is being someone with this condition and that researchers are desperate to get more people involved.
Valerie
Thanks for posting your summary of what sounds like a really interesting day. I agree with you that it is important that we get more people involved in research. PWP and their friends and carers have an important part to play throughout the research process.
Like you, I have found that getting involved is a great way to fight back against the condition.
Is DENDRON planning any follow up events?
EF
Thanks for posting your summary of what sounds like a really interesting day. I agree with you that it is important that we get more people involved in research. PWP and their friends and carers have an important part to play throughout the research process.
Like you, I have found that getting involved is a great way to fight back against the condition.
Is DENDRON planning any follow up events?
EF
Hi EF, if you go to the DENDRON website you can fill in an online form to join. There are options as to what people might be interested in. 