Who can participate?: People who have been diagnosed with neuromyelitis optica spectrum disorder are welcome to participate in the study. You need to be 18 years old or older, and living in Australia to participate in the study.

Can I tell other people about the study? Yes, you are welcome to tell other people about the study.

What is involved?: The study will include an online questionnaire that will take approximately 25 minutes to complete, as well as a structured interview by telephone that will take approximately 30 – 45 minutes, but you will have as much time as you need. The structured interview is conducted with one of our nurses and is a great opportunity for people to talk about and document their experience to benefit others in the future. In our past studies, participants have found that participating in the study made them feel good because they had the chance to reflect on their experience and talk about it, and also help others in the future.

Please read the participant information here – click here

Will I be told the results of the study? Yes! We will provide all participants with a copy of the study results. The final report will be in a format similar to this 

The first report of the register is being launched in July 2021. Every person that participates after this will have their information stored in the registry and over time, we can add this information to subsequent reports.

Study sponsor: The study will being carried out by the Centre for Community-Driven Research (CCDR). CCDR are a charity that conducts research to help patients have their voice heard. The first report

IF YOU HAVE TROUBLE WITH THE REGISTRATION PAGE, PLEASE EMAIL administration@cc-dr.org