Posted - May 2020 in HSPRF News
The ‘COVID-19 journal study’ is asking for people to share their experiences through monthly journal entries over the next year.
‘Journal’ entries can take any form: these might be illustrations, written entries, videos, or voice-recorded entries, photographs, social media posts, poems or artworks. Any form that helps capture your ongoing experience!
To express your interest in participating please register for the study. Researchers will then be in contact with further details.
Who can take part
Anyone over the age of 18 years, with a Genetic, Undiagnosed, or Rare Disease, as well as carers, or members of advocacy and support groups can take part in this study.
How to take part
Participants are invited to email their journal entries to researchers each month. All entries will be stored securely in password-protected computers and kept anonymous.
Recruitment will take place through the month of June 2020. Researchers will be in contact with further details.
Researchers from Australian Genomics, Murdoch Children’s Research Institute and the Genetic Support Network would like to hear from those in the HSP and other rare disease communities about the impacts of the COVID-19 pandemic on their well-being, access to healthcare, and peer support. The researchers say “These journal entries will help us capture and understand the impact of the rapidly changing COVID-19 environment. By doing so, we can better identify and advocate for change that should continue into post COVID-19 healthcare and peer support settings to ensure the community are well supported into the future”.