Sickle cell disease (SCD) is a complex condition with few treatment options. Novo Nordisk wants to find treatments that could improve the lives of people with SCD.
For me, the process of deciding to participate in a clinical trial felt empowering - it was my choice to make about my own health care.
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Sarah |
Sickle Cell Warrior
To do so, Novo Nordisk is sponsoring (paying for) a clinical trial for SCD called HIBISCUS2. This trial is studying a potential new treatment called etavopivat*.
What is
HIBISCUS2?
Researchers and SCD warriors designed HIBISCUS2 together
HIBISCUS2 was designed with input from the SCD community. People living with SCD shared feedback about things such as the number of trial visits and types of tests people will have to do.
This partnership helped make HIBISCUS2 a trial that is:
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More focused on the participant’s experience
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Responsive to meet the needs of sickle cell warriors
What are the goals of this trial?
The main goal of this trial is to understand how well a trial treatment called etavopivat* works for people with SCD and to learn how safe it is.
Researchers primary areas of interest related to the trial are:
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Lower the number of painful sickle cell crises
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Prevent organ damage
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Decrease fatigue (help people feel less tired)
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Help people exercise more
Another goal is to have more participants from across the world join the trial. In the HIBISCUS trial, people from only 17 countries joined the trial. Researchers are working to expand this trial to 21 countries to have a bigger, more diverse group of participants.
What does is mean that HIBISCUS2 is in Phase 3
New treatments for SCD, such as etavopivat*, must go through a lot of clinical testing before they can become widely available.
HIBISCUS2 is a phase 3 trial, one of the final stages of testing a medicine needs to go through before it can be reviewed by health authorities like the FDA. If the results from all the clinical trials show health authorities that the medicine works well and is safe, they may approve it for use.
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This means that we still need to gather evidence that it will be a safe and effective treatment
How can joining this trial help me?
By joining the HIBISCUS2 clinical trial, you will have regular check-ups, tests, and conversations with your clinical trial doctor.
The results collected during the clinical trial may help you and could also contribute to developing better treatment options for the broader SCD community. While personal benefits are not guaranteed, participating in a clinical trial is a chance to take part in research that could shape the future of SCD care.
I personally believe if I don't join them, I can't expect to see the medical world advance in care for my community.
Shay |
Sickle Cell Warrior
Why is it called HIBISCUS2?
This clinical trial is a follow-up to HIBISCUS1. These trials are named after the hibiscus flower. Members of the SCD community chose this flower as a symbol for SCD clinical research. Hibiscus are known for their hardiness and ability to thrive in various conditions. This resilience mirrors the strength of SCD warriors who face daily challenges.
We chose the hibiscus flower intentionally.
The hibiscus flower truly embodies everything that we think about when we think about sickle cell disease as a group of individuals who are going through life and thriving despite hardships, thriving despite having limited resources and limited treatment options... That is how we see and how the sickle cell community has presented themselves to us.
Dr. Ify Osunkwo | Chief Patient Officer at Novo Nordisk Rare Disease; Sickle Cell Disease Provider; Sickle Cell Disease Advocate
Etavopivat is not approved for the treatment of sickle cell disease. Safety and efficacy are not established. There is no guarantee that Etavopivat will become commercially available for the use(s) under investigation.
* Disclaimer