RecruitingOBSERVATIONAL

CEDUR - German IBD Registry

The CEDUR registry is an important project in Germany that gathers information from adults living with inflammatory bowel disease (IBD), such as Crohn's disease, ulcerative colitis, and a less common form called indeterminate colitis. It's like a big survey that collects details about how these conditions are treated in everyday medical practice, not just in special research studies. The main goals are to check the quality of care people receive, see how effective different treatments are, understand any side effects, and even look at the costs involved. By collecting this real-world information directly from patients and their doctors, the registry helps researchers and healthcare providers improve care and support for people with IBD over the long term.

At a glance

Status

Recruiting

Sponsor

ImmunoRegister gUG

Enrolment target

10,000

Start

03 May 2018

Estimated completion

01 May 2036

Ulcerative Colitis (UC)Indeterminate Colitis Crohn Disease (CD)

What is this study about?

The CEDUR registry is a study happening in Germany focused on people who have inflammatory bowel disease (IBD). This includes conditions like Crohn's disease, ulcerative colitis, and indeterminate colitis. Think of it as a big, ongoing information-gathering project, rather than a traditional drug trial.

The main idea behind CEDUR is to understand what living with IBD is really like for patients and how their conditions are managed by doctors in Germany every day. It's not about testing a new medicine, but rather observing how existing treatments work, what side effects people experience, and how the disease affects their quality of life. This 'real-world data' is incredibly valuable because it shows what happens outside of controlled research settings.

By collecting information from lots of different hospitals and clinics across Germany, the registry helps healthcare professionals learn more about IBD. This knowledge can then be used to improve the quality of care, make sure treatments are effective and safe, and understand how to best support patients over many years. Ultimately, it aims to lead to better long-term health and well-being for people with these conditions.

Key takeaways

This study collects information, it's not a drug trial.
It's for adults in Germany with Crohn's, ulcerative colitis, or indeterminate colitis.
Aims to improve understanding and care for IBD.
Your routine medical information will be collected.
Participation helps future IBD patients.
Your privacy is protected, and you can leave any time.

Who may be eligible?

To be part of this registry, you need to be an adult, aged 18 or older. The main requirement is that you have been diagnosed with one of a few specific bowel conditions: Crohn's disease, ulcerative colitis, or indeterminate colitis.

If you have other stomach or bowel conditions that are not one of those three, then this particular registry would not be suitable for you. It's specifically designed to collect information only from people with these forms of inflammatory bowel disease.

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 Crohn's disease, ulcerative colitis, or indeterminate colitis?
Do you live and receive treatment in Germany?
Do you *not* have other bowel conditions instead of these three?

Answer every question to see your result.

What does participation involve?

If you participate in this registry, it means that information about your inflammatory bowel disease (IBD) and your treatment will be collected regularly by your doctor and potentially directly from you. This isn't a study where you'd be given a new medication or have extra tests that you wouldn't normally have as part of your routine care. Instead, it involves observing your condition and treatment as usual.

The collected information will include details about your symptoms, any medication you're taking, how well you're feeling, and any side effects. This data is gathered over time, often during your regular doctor visits. There isn't a set duration mentioned, as registries typically collect information over a long period, continuously updating with new details about your health journey.

Potential risks and benefits

Being part of a registry like CEDUR generally has very low risks, as it primarily involves collecting existing information from your medical care. Your personal details will be kept private and your data made anonymous. The main benefit is that your experiences contribute to a larger understanding of inflammatory bowel disease, which can help improve care and treatments for many people in the future. You always have the right to withdraw your consent and stop participating at any time without affecting your medical care.

Locations (1)

ImmunoRegister gUG
Verified postcode
Hamburg, Germany· Recruiting

Common questions

What is a 'registry'?

A registry is like a large, organised collection of health information from many people with a specific condition. It helps researchers learn more about how the condition affects people in real life.

Will I get any special treatment if I join?

No, joining this registry won't change your medical treatment. You'll continue to receive your usual care from your doctors, and the registry will simply collect information about it.

Is my personal information kept private?

Yes, all your personal information is kept strictly confidential. The data collected is usually made anonymous so that all personal identifiers are removed to protect your privacy.

Do I have to live in Germany to join?

Yes, this specific registry is collecting information from patients with IBD who are receiving care in Germany.

How long will I be in the registry?

Registries often collect information over many years. There isn't a strict end date, as it aims to track your health and treatment journey over time.

How to find out more

Stefanie Howaldt, MD

howaldt@immunoregister.de +4940423265150 Official trial record

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