Share your experience for research
Share your myeloma journey to help research! Shape future care and make your voice heard in studies on treatment and daily life.
In addition to clinical trials that investigate new treatments for myeloma, there are also many research initiatives that are more focussed on improving the lived experience of myeloma.
Here are some current projects seeking participants willing to share their experience of living with myeloma.
Community and Patient Preference Research (CaPPRe)
Understanding what people with myeloma want from their treatment.
CaPPRe is working with Johnson & Johnson to speak with people around the world who have been diagnosed with Multiple Myeloma (MM), to understand what matters most when choosing between treatment options.
- Your answers will help researchers understand what’s important to you when weighing up different MM treatments.
- The results will be used to help develop and assess future treatments, based on what patients value and want.
- Taking part involves a short 20-minute online survey.
- You’ll receive a $70 gift card as a thank you for your time.
The My-PROMPT-2 National Trial
This national trial is testing real-time symptoms feedback from people living with myeloma to help improve how long treatment is tolerated and ultimately lead to better outcomes.
Many people stop therapy early due to side effects. This study aims to change that by putting your experience at the centre of care.
If you have relapsed myeloma and are living in Queensland, Victoria or New South Wales and are on standard therapies you may be eligible.
What do you want to know? Information needs in myeloma
Researchers at Monash University are inviting people diagnosed with monoclonal gammopathy of unknown significance (MGUS), smouldering myeloma or multiple myeloma to share their views on health information. Carers, family members and close friends are also welcome to take part.
- Your answers will help researchers understand what information people want about their condition, how much detail they prefer, and which sources they trust.
- Your answers will help researchers understand what information people want about their condition, how much detail they prefer, and which sources they trust.
- Taking part involves a 10 to 15 minute online survey.
- The research is led by Dr Catriona Parker at Monash University and funded by the Australian Government’s Medical Research Future Fund (MRFF)
If you have any questions, please contact catriona.parker@monash.edu
Know someone who might be interested? Please share this invitation with others in your network.
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Myeloma – a comprehensive guide
This guide is written for people who have been diagnosed with myeloma, their families, carers and friends.
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