Research continues on inherited forms of MND

Image of Jade Howard

April 2020: Centre researcher Jade Howard tells us about her research into family experiences of inherited forms of MND and how COVID-19 has been affecting her work. 

My name is Jade Howard, and I am a PhD student from the University of Aberdeen. My project is an interview study on family experiences of inherited forms of MND, which affect around 5-10% of people with the disease. I am also collaborating with researchers at the University of Oxford to develop the interviews into a web resource on the website Healthtalk.org, which shares the lived experience of different health conditions and experiences.

At the start of this year, I began interviewing people from across the UK who have been affected by inherited MND. As well as people with symptoms of MND, I am interested in interviewing people at risk, who have a family history of MND but no symptoms themselves, as well as other family members such as partners. Taking part in an interview involves having a conversation on people’s experiences of the disease in their family, such as what it is like to live at risk of developing MND in the future; how they communicate around the disease; how they make decisions around pre-symptomatic genetic testing and having children; and attitudes towards and experiences of participating in research. I have interviewed 11 participants to date, and aim to do 40 interviews in total.

Although COVID-19 has meant that I have had to pause in-person interviews, lots of people have been working hard to find ways to do interviews remotely, consistent with ethical approval and data security requirements. Instead of going into people’s homes, I will be doing interviews using video software, phone conversations, and email correspondence. This will ensure that we can continue working towards our aim of improving understanding around experiences of inherited MND, and developing the Healthtalk resource as a lasting source of information and support for patients, families and healthcare professionals.

If you would like to hear more about the study or are interested in taking part, please contact me at: j.howard.18@abdn.ac.uk.

Update - June 2020

The researchers are particularlyinterested in hearing from everyone with inherited MND in the family, but are particularly looking to speak to:

  • Younger people (i.e. under 40), including those with a grandparent diagnosed with inherited MND
  • People with a family history of MND but who have received a negative pre-symptomatic genetic testing result
  • People who have a gene linked to inherited MND but who have no other family members who they know have been affected
  • People from black and minority ethnic communities

Related links

www.heathtalk.org

Link to study details on University of Aberdeen website

This article was published on: Wednesday, April 29, 2020
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