RecruitingOBSERVATIONAL

Research Platform Myelofibrosis and Anemia

This project, called RHODOLITE, is setting up a large study across Germany to understand how people with myelofibrosis, a type of bone marrow disorder, and anaemia are managed in their everyday care. Researchers will collect detailed information about patients' characteristics, their specific type of myelofibrosis, the treatments they receive, and how their illness progresses. Importantly, this study also asks patients directly about their quality of life. The main goal is to identify common treatment approaches and how they change over time, helping doctors and researchers understand the best ways to care for people with these conditions. Patients will be followed for up to three years to gather this important information.

At a glance

Status

Recruiting

Sponsor

iOMEDICO AG

Enrolment target

200

Start

19 Feb 2026

Estimated completion

01 Sep 2031

Primary Myelofibrosis Secondary Myelofibrosis Post-polycythemia Vera Myelofibrosis Post-essential Thrombocythemia Myelofibrosis Anemia Myelofibrosis; Anemia Myelofibrosis

What is this study about?

This research project, known as RHODOLITE, is an important study happening in Germany. It's designed to gather a lot of information about people living with a condition called myelofibrosis, especially if they also have anaemia (a low red blood cell count). Myelofibrosis is a specific type of bone marrow disorder that affects how your blood cells are made. The study aims to understand how patients are currently diagnosed, treated, and how their illness changes over time in routine medical practice. Think of it like taking a detailed look at many different patients' journeys to see what works best.

The main idea behind RHODOLITE is to create a 'research platform' where they can collect consistent information from many different hospitals and clinics. This includes details about your specific type of myelofibrosis, any genetic information relevant to your condition, the treatments you receive (like medicines), and how your health progresses. A really key part of this study is also collecting 'patient-reported outcomes' – this means asking you directly about how you feel and your quality of life, which is very important for understanding the full impact of the illness and its treatments.

By following patients for up to three years, the researchers hope to identify common treatment plans and see how these plans might change as the disease progresses or as new treatments become available. This information is incredibly valuable. It helps doctors understand the various ways myelofibrosis and anaemia are managed in the real world, and can ultimately lead to better care and understanding for future patients.

Key takeaways

This study collects real-world information on myelofibrosis and anaemia.
It aims to understand common treatments and how the disease progresses.
Your quality of life will be an important part of the information collected.
It does not involve new medicines, only observing your standard care.
Participation helps improve understanding and care for future patients.
It's a long-term study, following patients for up to three years, primarily in Germany.

Who may be eligible?

To be part of this study, you would need to have received a confirmed diagnosis of myelofibrosis. This could be primary myelofibrosis, or myelofibrosis that developed after having polycythemia vera or essential thrombocythemia. You also need to have anaemia at the time you join the study, as confirmed by your doctor.

The study is looking for people who are just starting their first treatment for myelofibrosis or who are starting a new treatment. It's important that you are willing and able to share information about your health and how you feel through surveys.

However, you wouldn't be able to join if you are not receiving any treatment for your myelofibrosis, or if you are planning to have a particular type of transplant called an allogenic stem cell transplant. You also can't take part if you are already involved in another active research study that is testing a new treatment.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I have been diagnosed with primary myelofibrosis, or myelofibrosis that developed after polycythemia vera or essential thrombocythemia.
My doctor has confirmed I have anaemia right now.
I am currently starting my first treatment, or a new treatment, for myelofibrosis.
I am an adult (18 years or older).
I am willing and able to complete questionnaires about my health and how I feel.
I am not planning an allogeneic stem cell transplant and am not in another clinical trial testing new treatments.

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the doctors and nurses will collect information about your health, your specific type of myelofibrosis, and any treatments you've had before. As the study progresses, they will continue to record details about all the treatments you receive for your myelofibrosis and how your health changes. You will also be asked to complete questionnaires about your quality of life – how you feel day-to-day. This helps the researchers understand the impact of your condition and its treatment from your perspective.

The study plans to follow patients for up to three years, continually gathering this information. There are no specific medications or new treatments given as part of this study; it's about observing and recording what happens during your usual care. After the initial three years, some of your information may continue to be tracked for a longer period (at least five more years) within a separate related registry.

Potential risks and benefits

Taking part in this study primarily involves sharing your medical information and completing questionnaires about your health and quality of life. The main benefit is that your information will contribute to a better understanding of myelofibrosis and anaemia, potentially helping to improve care for other patients in the future. There are no direct medical risks from participating, as you will continue with your standard medical care; however, sharing personal health information always carries a very small risk, which the researchers will protect carefully. You are always free to change your mind and withdraw from the study at any time without it affecting your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Multiple sites all over Germany
Unverified
Multiple Locations, Germany· Recruiting

Common questions

What is myelofibrosis?

Myelofibrosis is a condition where scar tissue builds up in your bone marrow, which is the spongy tissue inside your bones that makes blood cells. This can lead to problems like anaemia and an enlarged spleen.

What does 'anaemia' mean?

Anaemia means you have fewer healthy red blood cells than normal, which can make you feel tired, weak, and short of breath because your body isn't getting enough oxygen.

Will I receive new medicine in this study?

No, this study is about observing and recording your usual medical care and how your current treatments work. It's not testing any new medicines or treatments.

What does 'patient-reported outcomes' mean?

It means you will be asked questions about how your condition and its treatment affect your everyday life, including how you feel, your energy levels, and your overall quality of life.

Can I stop participating in the study if I change my mind?

Yes, you can choose to withdraw from the study at any time, and this will not affect the medical care you receive.

How to find out more

iOMEDICO AG

info@iomedico.com +4976115242 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.