International HIT-MED Registry (I-HIT-MED)
The I-HIT-MED Registry is gathering important health information and samples from children and adults in Germany and other countries who have certain rare brain tumours, such as medulloblastoma, ependymoma, and pineal tumours. These tumours are uncommon, and many patients aren't involved in traditional clinical trials. This registry helps researchers collect valuable data to learn more about how these tumours behave, how best to treat them, and how patients' lives are affected in the long term. By sharing this information, the registry aims to improve understanding and cooperation among doctors worldwide, leading to better care and treatment recommendations for everyone affected by these conditions. It's about ensuring all patients contribute to improving future treatment.
At a glance
What is this study about?
The I-HIT-MED Registry is like a large, organised collection of health information for children and adults who have been diagnosed with certain rare brain tumours. These include tumours called medulloblastoma, ependymoma, pineal tumours, and choroid plexus tumours. Because these types of tumours are not very common, it can be hard for doctors to gather enough information to fully understand them and decide on the best treatments. This registry helps by bringing together information from many patients in different countries.
The main goal of this registry is to learn more about these rare brain tumours. Researchers study things like how these tumours develop, what makes them respond to treatment in certain ways, and what might make them come back. They also look at how current treatments affect patients' quality of life and long-term health. This information is key to developing better treatments and making sure patients get the best possible care, even if they aren't part of a specific drug trial.
By collecting data and biological samples (like tumour tissue or blood) from patients, the I-HIT-MED Registry helps doctors build a bigger picture of these diseases. It encourages doctors from different countries to work together and share what they learn. This teamwork helps improve the care guidance and support for patients and their families, ensuring that the latest knowledge is used to benefit everyone affected by these rare brain tumours.
Key takeaways
- This registry collects information on rare childhood and adult brain tumours.
- It helps doctors learn more about these conditions and improve treatment.
- Participation involves sharing existing medical data and samples, not extra procedures.
- It aims to improve care for patients not in traditional clinical trials.
- Your information helps global research efforts.
- You can withdraw at any time.
Who may be eligible?
This registry is open to children and adults of any age who have been diagnosed with certain rare brain tumours. These include medulloblastoma, ependymoma, pineal tumours, or choroid plexus tumours. If your ependymoma, certain pineal tumours, or papillary tumour of the pineal region was diagnosed before your 18th birthday, you might also be included, even if you are an adult now.
To be part of this registry, your diagnosis must have been made after January 1st, 2012. You can join if you haven't been included in another clinical trial for the same diagnosis. This might happen if there aren't any trials available where you live, or if you chose not to participate in one.
Before joining, you or your legal guardian will need to give written permission for your health information and any collected samples to be used. The registry also needs to have approval from an ethics committee in your country to make sure everything is handled properly and safely.
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 diagnosis of medulloblastoma, ependymoma, pineal tumour, or choroid plexus tumour?
- Was my diagnosis made after January 1st, 2012?
- Am I either not currently in another clinical trial for this diagnosis, or was I unable to join one?
- Am I willing to give written permission for my health data and samples to be used for research?
What does participation involve?
If you decide to join the I-HIT-MED Registry, it mostly involves allowing doctors to share your health information and possibly some biological samples (like tumour tissue, spinal fluid, or blood) that were collected as part of your normal medical care. You won't need to take any new medications or have extra appointments specially for the registry. The doctors will simply record details about your diagnosis, treatment, and how you are doing over time. This information helps them understand the long-term effects of these rare tumours and their treatments. The registry continues to collect information over many years to track patients' progress and recovery.
Potential risks and benefits
Locations (57)
- University Hospital AachenVerified postcodeAachen, Germany· Recruiting
- Klinikum AugsburgVerified postcodeAugsburg, Germany· Recruiting
- Helios Klinikum Berlin-BuchVerified postcodeBerlin, Germany· Recruiting
- Charite Campus, University of BerlinVerified postcodeBerlin, Germany· Recruiting
- Evangelisches Krankenhaus BielefeldVerified postcodeBielefeld, Germany· Recruiting
- Klinikum BraunschweigVerified postcodeBraunschweig, Germany· Recruiting
- Klinikum Bremen-MitteVerified postcodeBremen, Germany· Recruiting
- Klinikum ChemnitzVerified postcodeChemnitz, Germany· Recruiting
- University Hospital CologneVerified postcodeCologne, Germany· Not yet recruiting
- Carl-Thiem-Klinikum CottbusVerified postcodeCottbus, Germany· Recruiting
- Vestische Kinder- und Jugendklinik, University Witten/HerdeckeVerified postcodeDatteln, Germany· Active not recruiting
- Klinikum DortmundVerified postcodeDortmund, Germany· Recruiting
Common questions
What kind of brain tumours are included in this registry?
The registry includes rare brain tumours like medulloblastoma, ependymoma, pineal tumours, and choroid plexus tumours.
Do I need to take new medicines or have extra tests if I join?
No, you don't need to take new medicines or have extra tests. The registry uses information and samples from your standard medical care.
Will my personal details be kept private?
Yes, your information will be handled according to strict privacy rules and ethical guidelines in your country to protect your identity.
Can children and adults join?
Yes, both children and adults with these specific brain tumour diagnoses can be included in the registry.
What if I change my mind about participating?
You are free to withdraw your consent to participate at any time, without it affecting your medical care.
How to find out more
Stefan Rutkowski, Prof.
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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