Myeloma Registry Platform (MYRIAM)
The MYRIAM study is a national project in Germany to learn more about multiple myeloma, a type of blood cancer. It involves gathering information from people diagnosed with myeloma to understand their journey with the disease. This includes details about their characteristics, how their disease is diagnosed, the treatments they receive, and how they feel over time. The study also collects patient views on their quality of life. The main goal is to build a rich picture of multiple myeloma across Germany to help doctors improve care and find better ways to treat patients in the future. It’s an ongoing effort to track and understand the disease better.
At a glance
What is this study about?
The MYRIAM study, short for 'Myeloma Registry Platform,' is a big project in Germany focused on multiple myeloma. Multiple myeloma is a cancer that affects certain cells in your bone marrow. The main idea behind MYRIAM is to create a detailed database, like a comprehensive record book, for many people across Germany who have multiple myeloma. This database will collect important information about their health, their specific type of myeloma, and how they are treated over several years.
Think of it as putting together a large puzzle. Each patient who takes part contributes a piece of information. By looking at all these pieces together, researchers can get a much clearer picture of how multiple myeloma affects people, what treatments are commonly used, and how these treatments influence their lives. This includes understanding the usual journey of the disease, any changes in treatment approaches, and how people's daily lives and well-being are affected.
Ultimately, the goal of MYRIAM is to use this collected information to improve how multiple myeloma is understood and treated in the future. By seeing patterns and trends across many patients, doctors and researchers can identify what works best, spot any new issues, and make more informed decisions about patient care, aiming to improve the health and quality of life for everyone with this condition.
Key takeaways
- MYRIAM is a study gathering information about multiple myeloma in Germany.
- It aims to improve understanding and treatment of the disease.
- You will receive your usual medical care; no experimental treatments are involved.
- The study tracks patients for up to five years, collecting treatment and health information.
- Some participants will also share information about their quality of life.
- Participation is voluntary and confidential.
Who may be eligible?
To be part of the MYRIAM study, you need to be an adult (18 years or older) and have multiple myeloma that requires treatment. This treatment could be your first, second, or even third course of therapy. For those receiving their first or second treatment, recruitment for that specific part of the study has now closed. However, other parts of the study might still be open.
It’s important that you understand German well enough to fill out questionnaires if you are participating in the part of the study that asks about your quality of life. You'll also need to sign a consent form, which is a document that shows you understand what the study involves and agree to take part.
There are also some reasons why you might not be able to join. For example, if you don't need systemic treatment (like chemotherapy or other drug therapies) for your myeloma, or if you're already in another study that doesn't allow you to join MYRIAM at the same time, then you wouldn't be able to participate.
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.
- Are you 18 years old or older?
- Do you have multiple myeloma requiring treatment?
- Are you able to provide written consent to participate?
- If completing questionnaires, can you understand German well enough?
- Are you NOT already in a study that prevents joining others?
What does participation involve?
If you decide to take part in the MYRIAM study, it primarily involves allowing your medical team to share information about your multiple myeloma journey with the study. This includes details about your diagnosis, the treatments you receive (like medicines, radiation, or surgery), and how you are responding to them. This information will follow you for up to five years. You won't receive any new or experimental treatments; instead, you'll continue with the standard care your doctor recommends.
For some participants, there's an additional part of the study where you'll be asked to complete questionnaires about your health-related quality of life. These questionnaires help researchers understand how your condition and its treatments affect your daily life and well-being. If you participate in this part, you'll need to complete the first questionnaire around the start of your treatment. Your doctors will explain the exact timing. Your visits and assessments will be as per your routine medical care for multiple myeloma.
Potential risks and benefits
Locations (1)
- Multiple sites all over germanyUnverifiedMultiple Sites, Germany· Recruiting
Common questions
What is multiple myeloma?
Multiple myeloma is a type of cancer that affects plasma cells, a kind of white blood cell found in your bone marrow.
Do I have to change my treatment if I join?
No, you will continue to receive the standard treatment for multiple myeloma that your doctor recommends. The study does not involve new or experimental treatments.
How long will I be in the study?
The study will follow your health and treatment journey for up to five years, collecting information during this time.
Will my personal details be shared?
Your personal details will be kept private and confidential. The information shared with the study will be anonymised or handled in a way that protects your identity.
What happens if I decide I don't want to be in the study anymore?
You are free to withdraw from the study at any time, for any reason, and this will not affect your medical care or relationship with your doctor.
How to find out more
Martina Jänicke, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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