The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers
This project, called The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers, is creating a special online database. It focuses on rare head and neck cancers like those affecting the nose, mouth, throat, ears, and salivary glands. Healthcare experts across Europe will share information about their patients with these rare cancers. The goal is to learn more about how these cancers develop, what treatments work best, and what helps improve a patient's life. By gathering this real-world information from many hospitals, researchers hope to fill gaps in knowledge and ultimately improve the care provided to patients with these less common conditions. Your personal data is kept safe and private according to strict rules.
At a glance
What is this study about?
Imagine a special online notebook where doctors from many different hospitals across Europe can safely write down important details about patients with very rare head and neck cancers. That's exactly what this project, called The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers, is creating. The cancers it covers include those found in the nose, mouth, throat, salivary glands, and middle ear.
The main idea is that because these cancers are rare, no single doctor or hospital sees enough of them to learn everything. But by bringing information together from many places, we can build a much clearer picture. Researchers want to understand exactly how these rare cancers behave over time, which treatments are most effective, and what factors might influence a person's recovery and overall health. This will help improve the quality of care for patients with these conditions in the future.
All the information is collected very carefully, either from existing hospital records or directly from specialist doctors. Your personal details are kept private and secure, following strict European data protection laws. The registry uses smart technology to share only the necessary information for research without revealing your identity, ensuring your privacy is protected at all times.
Key takeaways
- This is a European registry collecting data on rare head and neck cancers.
- It aims to improve understanding and treatment of these conditions.
- Data comes from routine medical care, no extra tests are needed.
- Your privacy is protected by strict data laws.
- You won't receive new treatments or medicines through this registry.
- Your contribution helps future patients with similar conditions.
Who may be eligible?
This registry is looking for information from adult patients, aged 18 or older, who have been diagnosed with certain rare head and neck cancers. These include specific types of cancer in the nasopharynx (upper part of the throat behind the nose), nasal cavity and sinuses, salivary glands, or middle ear. It also includes certain neuroendocrine or adenocarcinoma cancers in other parts of the throat and mouth, as well as specific odontogenic (tooth-related) cancers.
Your cancer must have been diagnosed or confirmed by a specialist at one of the hospitals taking part in this European network. The doctors can include information about patients who are new to their care from 2021 onwards. They can also include details for patients who were diagnosed as far back as 2018, as long as they are still being followed up and treated by that hospital.
Simply put, if you are an adult with one of these rare head and neck cancers and your care is managed by a participating specialist centre, your information might be included. Children under 18 years old are not part of 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.
- Are you 18 years old or older?
- Do you have a rare head and neck cancer (e.g., in the nose, mouth, throat, salivary glands, or middle ear)?
- Was your cancer diagnosis confirmed by a specialist at a participating European hospital?
- Are you currently being followed up by that hospital for your condition?
- Were you diagnosed in 2018 or later (or are you a new patient from 2021 onwards)?
What does participation involve?
This is not a study where you'll receive new medicines or treatments. Instead, it's a registry, meaning doctors will collect information about your existing care. If you are eligible, your healthcare provider will gather details from your medical records. This includes things like your specific cancer diagnosis, how it's being treated, and how you're responding.
You won't need extra hospital visits or special tests just for this registry. All the information collected comes from your routine medical care. The staff at your hospital will handle the data input, ensuring your privacy is protected. There is no specific duration for your participation; your information will be added as part of your ongoing care for as long as you are followed by the participating hospital. You will not have to do anything differently.
Potential risks and benefits
Locations (10)
- Masaryk Memorial Cancer InstituteVerified postcodeBrno, Czechia· Not yet recruiting
- University Hospital EssenCity onlyEssen, Germany· Not yet recruiting
- IRCCS Ospedale Policlinico San MartinoVerified postcodeGenova, Italy· Recruiting
- IRCCS Ospedale San RaffaeleVerified postcodeMilan, Italy· Recruiting
- IRCCS Istituto Europeo di OncologiaVerified postcodeMilan, Italy· Recruiting
- IRCCS Istituto Clinica HumanitasVerified postcodeRozzano, Italy· Recruiting
- Fondazione IRCCS Istituto Nazionale dei TumoriVerified postcodeMilan, Italy· Recruiting
- Centro Nazionale di Adroterapia OncologicaVerified postcodePavia, Italy· Recruiting
- Nuovo Ospedale di Prato - S. StefanoVerified postcodePrato, Italy· Not yet recruiting
- IRCCS Istituto Nazionale Tumori Regina ElenaVerified postcodeRoma, Italy· Recruiting
Common questions
What exactly is a 'registry'?
A registry is like a secure, organised database where doctors collect information about patients with specific diseases. It helps researchers learn from many different patient experiences.
Will this registry change my treatment?
No, this registry will not change your treatment. It only collects information about the care you are already receiving.
Is my personal information safe?
Yes, your personal information is kept very safe and private. It follows strict European data protection laws, and your identity is protected when data is used for research.
Do I have to do anything if my information is included?
No, you don't need to do anything extra. This registry collects information from your existing medical records as part of your standard care.
Why is this registry important for rare cancers?
Rare cancers don't affect many people, so learning from a small group is hard. By gathering information from many hospitals across Europe, this registry helps doctors understand these cancers better and improve future treatments.
How to find out more
Lucia Buratti
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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