RecruitingOBSERVATIONAL

Rare Tumours in Children and Adolescents (STEP)

This project, called STEP, is collecting important information about rare types of cancer that affect children and teenagers. Because these cancers are rare, there isn't always a lot of information available. By gathering details about how these cancers are diagnosed and treated, researchers hope to improve care for young patients. The aim is to ensure that having a rare cancer isn't a disadvantage, and that all young people receive the most effective treatments. This involves looking at patient information and also doing scientific research into the cancers themselves, working with experts from around the world to share knowledge and develop better recommendations.

At a glance

Status

Recruiting

Sponsor

University Hospital Tuebingen

Enrolment target

10,000

Start

11 Jan 2023

Estimated completion

01 Jan 2055

Rare Diseases

What is this study about?

The STEP study is all about helping children and teenagers with rare types of cancer. When a cancer is rare, it means not many people get it, which can make it harder for doctors to know the very best way to treat it. This study is like a detective project, carefully collecting lots of information about these rare cancers from different patients.

The main idea is to build up a much clearer picture of what these rare cancers are like, how they behave, and what treatments work well. By understanding more, doctors can make better decisions and give the best possible care to young patients. They look at things like how the cancer was found, what treatments were given, and what the results were.

Beyond just collecting patient information, scientists are also studying the cancers themselves in the lab to understand their unique features. This project also involves working closely with other experts internationally, sharing knowledge to find new and better ways to treat these rare conditions and ensure young patients have the best chance of getting well.

Key takeaways

This study helps improve care for children and teenagers with rare cancers.
It collects data from existing medical records, not new procedures.
The goal is to better understand rare cancers and their best treatments.
Participation involves sharing medical information securely and confidentially.
It helps build a global network of experts for rare cancer research.
You can withdraw consent at any time.

Who may be eligible?

To be part of this study, a child or teenager must have been diagnosed with a rare solid tumour. They need to be between birth (1 day old) and 18 years old when they were diagnosed. In some special cases, young adults might be included if they wish and give their permission.

It's really important that consent is given for a patient's information to be used. This means the patient or their parent/guardian must understand what the study involves and agree to take part in writing.

Also, a patient can't be included if their tumour diagnosis is already being recorded in certain other clinical studies or registries run by the German Society for Pediatric Oncology and Hematology (GPOH). This is to make sure information isn't duplicated.

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.

Is the patient 18 years old or younger?
Has the patient been diagnosed with a rare solid tumour?
Is the patient or guardian willing to give written consent?
Is the patient not currently registered in specific other German cancer studies?

Answer every question to see your result.

What does participation involve?

If you or your child takes part in this study, you won't need extra hospital visits or assessments beyond what's already planned for their usual care. This study is mainly about collecting information that doctors already gather during diagnosis and treatment. There are no new medications or treatments given as part of this study.

The study involves researchers collecting details from your child's medical records, such as information about their diagnosis, the type of cancer, the treatments they received (like surgery, chemotherapy, or radiotherapy), and how they are responding to treatment over time. This information is then added to a secure database.

There isn't a set 'total duration' for individual participation in the sense of active involvement beyond agreeing to share data. The data collection for the study itself is ongoing, aiming to gather as much information as possible over time to help future patients.

Potential risks and benefits

The main benefit of taking part is contributing to a bigger picture of rare childhood cancers, which can help improve diagnosis and treatment for other young patients in the future. Because this study only collects existing medical information and doesn't involve any new treatments or procedures, there are no direct physical risks to the patient. The main risk involves privacy; however, all personal information is kept strictly confidential and anonymous whenever possible to protect your child’s identity. You are free to withdraw your consent at any time without affecting your child’s medical care.

Locations (1)

University Hospital Tübingen
Verified postcode
Tübingen, Germany· Recruiting

Common questions

What kind of cancers are classed as 'rare' for this study?

This study focuses on solid tumours in children and teenagers that are considered rare. Your doctor can confirm if your child's specific tumour type fits this description.

Will my child receive new treatment if we join this study?

No, this study is about collecting information from standard medical care. Your child will not receive any new treatments or medications specifically because of joining this study.

Is my child's information kept private?

Yes, all personal information is kept very private and confidential. It's stored securely, and researchers use anonymous data whenever possible.

Who is running this study?

This study is being run by a group dedicated to understanding and improving care for children and teenagers with rare cancers, working with international partners like the European EXPeRT group.

Can I change my mind about my child participating?

Yes, you have the right to withdraw your consent for your child's information to be used at any time, without it affecting their medical care.

How to find out more

Ines Brecht, PD Dr. med.

ines.brecht@med.uni-tuebingen.de +49 7071 29 Official trial record

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