RecruitingOBSERVATIONAL

The Myeloid Neoplasms Biology and Outcome Project

The Myeloid Neoplasms Biology and Outcome Project (MyBOP) is setting up a special database for people living with myeloid neoplasms, which are conditions affecting blood cells. This project gathers important information like your health details, biological samples, and how you're feeling over time. The main goal is to get a clearer picture of these conditions, understand how they develop, and find better ways to predict their course. This information will help doctors improve care for patients and guide the development of new, more personalised treatments. By comparing results across different hospitals, the project also helps ensure everyone is getting the best possible care.

At a glance

Status

Recruiting

Sponsor

University Hospital Heidelberg

Enrolment target

1,000

Start

10 Mar 2020

Estimated completion

31 Dec 2032

Myeloid Neoplasm

What is this study about?

Myeloid neoplasms are a group of conditions that affect the blood and bone marrow, where blood cells are made. Researchers and doctors are constantly learning more about these conditions, especially at a very detailed level looking at genetics and other biological factors. This new understanding helps them diagnose conditions more accurately and opens doors for developing new and targeted treatments. However, there's still a lot to learn about how these conditions behave and which treatments work best for different people.

That's where the Myeloid Neoplasms Biology and Outcome Project (MyBOP) comes in. It's creating a comprehensive registry, which is like a detailed collection of information, for people with myeloid neoplasms. The project will carefully collect clinical details about your condition, biological samples (like blood samples), information about your life situation, and importantly, your own experiences and how you feel over time. All this information is brought together in a structured way for scientific study.

The main reasons for doing this are to improve how doctors manage myeloid neoplasms, helping them make better treatment decisions based on solid evidence. It also aims to make it easier for patients to access new and personalised treatments by helping them find suitable clinical studies. Finally, it helps hospitals check the quality of their care by comparing their patient outcomes with wider data, making sure everyone receives the best possible treatment.

Key takeaways

MyBOP is a registry collecting information on myeloid neoplasms.
It aims to improve understanding and treatment of these blood conditions.
Participation involves sharing medical data and samples.
No new treatments are given as part of this project.
Your information helps doctors improve care for all patients.
You can withdraw at any time without affecting your care.

Who may be eligible?

To be part of this project, you need to have a suspected or confirmed diagnosis of a myeloid neoplasm, as defined by the World Health Organization guidelines. You must also be 18 years old or older.

It's important that you understand what joining the study means for you and are able to provide your written consent. This means you should be physically and mentally capable of making this decision yourself.

You would not be able to join if you have a severe neurological or mental health condition that would prevent you from understanding the study and giving your written consent.

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.

Do you have a diagnosis of a myeloid neoplasm?
Are you 18 years old or older?
Can you understand what the project is about?
Are you able to provide written permission (consent) to join?

Answer every question to see your result.

What does participation involve?

This project is a registry study, which means it mainly involves collecting information over time rather than testing a specific new treatment. Taking part would involve sharing your health information from your medical records, providing biological samples (like blood tests) that you might already be giving for your regular care, and potentially answering questions about how you are feeling (patient reported outcomes). The project aims to follow participants long-term to understand how their condition changes over time. There are no specific medications provided as part of this registry. The total duration of your participation would be ongoing, as the project aims for long-term follow-up.

Potential risks and benefits

While this is a registry study and doesn't involve experimental treatments, there are potential benefits and some considerations. The main benefit is knowing that your information will contribute to a better understanding of myeloid neoplasms, which could lead to improved diagnosis and treatment for future patients. There are no direct medical benefits to you personally, although it may help pave the way for personalised treatments in the future. The risks are minimal, mainly involving the time taken to provide information and samples, and the very small chance of a data breach, though strict measures are in place to protect your privacy. You are always free to withdraw from the study at any time without affecting your medical care.

Locations (1)

UHHeidelberg
Verified postcode
Heidelberg, Germany· Recruiting

Common questions

What exactly is a myeloid neoplasm?

Myeloid neoplasms are a group of conditions where the body makes too many, or not enough, abnormal blood cells in the bone marrow, which is the spongy tissue inside your bones that makes blood cells.

Is this a new treatment trial?

No, this is not a trial for a new treatment. It's a 'registry study' which means it's collecting information and samples from patients with myeloid neoplasms to better understand their conditions.

How long will I be involved in the project?

The project aims to follow people over a long period. This means your information would be collected and updated as part of your normal medical care for many years.

Will I get any specific treatment by joining MyBOP?

No, MyBOP itself does not provide any specific treatments. Your medical team will continue to manage your care as usual. However, it might help you find other treatment studies in the future.

What happens to my personal information?

The project collects your health information and samples but takes great care to protect your privacy. Your data will be handled securely and used for scientific research to improve care for patients with myeloid neoplasms.

How to find out more

Editha Gnutzmann, M.A.

editha.gnutzmann@med.uni-heidelberg.de +49 6221 56 36235 Official trial record

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