Have your say about research priorities

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The relative of a close friend of mine is seriously ill with cancer. Supporting my friend and hearing of how their relative is, brings back memories of people close to me that have died. It brings back memories of what happened to them, how it affected me and my family. At the same time I find myself thinking – how would I react to approaching the end of life – would I want to know everything, perhaps I would want to concentrate on living and not think about dying too much?

Either as a relative or someone who has a condition, some of us would be on Google or talking to those around us, looking for answers and reassurance. For some of those questions there aren’t any answers available. Perhaps you can’t or couldn’t find the answers either?

Dr Belinda Cupid, Head of Research at the MND Association
Dr Belinda Cupid, Head of Research at the MND Association

The MND Association is working with a range of other charities and organisations on a project to collect these questions, and where we don’t know the answers, make plans to fund research to find the answers.

If you’re interested in taking part, as someone with MND, a carer (past or present) or a professional, then follow the link to the survey to share your views. The background to project is explained in more detail and then there are two open ended questions asking about care, support and treatment. Finally you will be asked some general questions about yourself (for example whether you’re writing from the perspective of someone with MND or a carer etc).

The survey is open to anyone who wants to share their views – whether they are or were affected by MND, heart disease or cancer. However, to help analyse the results later, please include the disease or condition you’re writing about.

Thank you.

5 thoughts on “Have your say about research priorities

  1. Pingback: Blog: Have your say about research priorities | Palliative and end of life care Priority Setting Partnership
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  3. Are you partnering with the US ALS Association? This is a wonderful project and sorely needed.

  4. Pingback: What should be top of palliative and end of life research To Do list? | MND Research
  5. Pingback: Research priorities in palliative and end of life care | MND Research

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