RecruitingOBSERVATIONAL

Multi-Center Registry for ME/CFS

This study, called MECFS-R, is building a large database in Germany to gather information about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It specifically looks at how common ME/CFS is, the different ways it can show up in people, how it progresses, and the healthcare people receive, no matter their age. Researchers hope this detailed information will help prepare for future studies and trials into ME/CFS. The study is particularly interested in ME/CFS that follows illnesses like glandular fever (caused by the Epstein-Barr virus) or COVID-19. By understanding more about this often misunderstood condition, the study aims to improve diagnosis and care for those affected.

At a glance

Status

Recruiting

Sponsor

Technical University of Munich

Enrolment target

650

Start

31 May 2022

Estimated completion

31 May 2052

ME/CFS CFS/ME ME/CFS Following EBV-associated Infectious Mononucleosis ME/CFS Following COVID-19

What is this study about?

ME/CFS is a long-term illness that can affect many parts of the body and sometimes cause severe disability. It's often misunderstood, and many people struggle to get the right diagnosis and care. This study aims to change that by gathering a lot of information about ME/CFS across all of Germany.

The researchers want to build a detailed picture of people living with ME/CFS. This includes understanding the different ways the illness shows up, what might trigger it (like infections such as COVID-19 or glandular fever), and how it changes over time. They are also looking at the healthcare people receive and how that impacts their journey with ME/CFS. The goal is to identify common patterns, risk factors, and different types of ME/CFS that might exist.

Ultimately, the detailed information collected in this registry will be a valuable resource for future research. It will help scientists design better clinical trials to find new treatments and improve care for the estimated 500,000 people living with ME/CFS in Germany. Patients who join may also be asked if they are willing to provide samples (like blood) for additional research.

Key takeaways

This study aims to understand ME/CFS better by collecting information from many people.
It's a web-based registry, primarily involving sharing health details online.
Participation could help improve future ME/CFS diagnosis and treatment.
People of all ages with a confirmed ME/CFS diagnosis are eligible.
You won't receive new treatments through this study, but your information is valuable.

Who may be eligible?

To take part in this registry, you must have a diagnosis of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that has been made using standard international guidelines. Because ME/CFS can affect anyone, people of all ages, from babies to older adults, can be included in this study.

Before you can join, you or your guardian (if you are under 18 or unable to give consent yourself) will need to give your permission by signing an informed consent form. This form explains what taking part involves and ensures you understand and agree to participate.

If you do not have a confirmed diagnosis of ME/CFS, or if you or your guardian are unable to give consent, then unfortunately, you won't be able to join this particular registry.

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 I have a confirmed diagnosis of ME/CFS?
Has my ME/CFS diagnosis been made using standard international criteria?
Am I able to give my permission to join the study (or can a guardian give it for me)?
Do I live in Germany?

Answer every question to see your result.

What does participation involve?

This study is a registry, which means it primarily involves providing information about your health and experiences with ME/CFS. It's a web-based study, so you'll likely complete questionnaires and share your health details online. You won't be prescribed any new medications as part of this study, nor will you have regular hospital visits or specific treatments.

For some participants, there might be an option to provide biological samples, such as blood, for future research. However, this would be an additional, optional step and would be explained in more detail if it applies to you. The total duration of your participation would likely be ongoing, as the registry aims to collect information over time to track the illness's progression.

Potential risks and benefits

A potential benefit of joining this registry is that your information will contribute to a greater understanding of ME/CFS. This expanded knowledge could help researchers find better ways to diagnose and treat the condition in the future, potentially improving care for many people. Your participation could also highlight the reality of living with ME/CFS. There are generally no direct medical risks as this is an observational study and doesn't involve new treatments or procedures beyond potentially providing samples. The main 'risk' would be the time and effort involved in providing your health information. You are free to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (1)

MRI Chronic Fatigue Center for Young People (MCFC) Children's Hospital, Technical University of Munich & Munich Municipal Hospital
Verified postcode
Munich, Germany· Recruiting

Common questions

What is a registry study?

A registry study collects health information from a large group of people with a specific condition. It helps researchers understand the illness better over time.

Do I need to live in Germany to participate?

Yes, this specific registry is focused on collecting data from people with ME/CFS in Germany.

Will I receive any new treatment if I join?

No, this study is about collecting information, not testing new treatments. You will continue to receive your usual medical care.

What happens to my personal information?

Your personal data will be kept private and handled carefully. The study aims to protect your privacy while using your information for research.

Can children take part in this study?

Yes, people of all ages, including children and young adults, can take part if they meet the other requirements.

How to find out more

Uta Behrends, Prof. Dr. med.

uta.behrends@tum.de +4989 30682632 Official trial record

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