FAQ

A biobank is a secure, controlled environment where biological samples, such as blood or tissue, are collected and stored alongside associated health data. These consistently managed data allow researchers to study diseases more efficiently, better understand their causes, and contribute to the development of more effective treatments.

Without a biobank, information is often fragmented across hospitals, laboratories, and registries, making research more difficult and significantly slower. Patient participation supports the creation of a sample and data collection that can serve as the basis for important studies and help improve the health of future patients.

You have been invited because you live with a condition that still requires better understanding and more effective treatment options. Your contribution may:

• help researchers study the causes of the disease;
• support the development of new treatment options;
• benefit future patients living with the same condition.

Every sample and every piece of shared information may represent a valuable contribution to the progress of research

• Blood: a sample collected through a standard, minimally invasive blood draw procedure (10–20 ml).
• Tissue sample: paraffin-embedded tissue blocks previously collected for diagnostic purposes.
• Imaging data: X-rays, CT scans, MRI scans, or results from other relevant imaging investigations.
• Clinical data: information from medical records, laboratory results, treatments, and data on the course of the disease.

All samples and data are stored securely in pseudonymized form and are used exclusively for ethically approved medical research purposes.

You may choose one or more of the following options:

Step 1: Providing a blood sample

• A small blood sample is collected (10–20 ml).
• This is a simple procedure with minimal risks: mild pain, bruising, or temporary dizziness may occur.

Step 2: Providing previously collected tissue samples

• Paraffin-embedded tissue blocks are stored securely and used for research purposes.
• The samples are pseudonymized to protect your identity.

Step 3: Providing imaging data

• X-rays, CT scans, MRI scans, or data from other relevant imaging investigations may be used.

Step 4: Providing clinical data

• Medical records, laboratory results, clinical visit data, treatments, and information on the course of the disease.
• The data are stored securely in pseudonymized form.

Every contribution can support the development of more effective treatments for future patients.

The sample is stored in a secure environment in pseudonymized form. Only authorized personnel may link your identity to the code, in accordance with legal and ethical requirements.

In ethically approved research projects related to your disease.

It may be shared with approved researchers or institutions in the European Union or, where lawful, outside the European Union as well.

All research projects must comply with the Declaration of Helsinki.

Samples and data are processed in pseudonymized form.

The data are protected by appropriate technical and organizational measures.

Participation is voluntary, and refusal to participate does not affect your medical care.

• You have the right to access your data and to request its correction or deletion.
• You may withdraw your consent at any time.
• Some rights may be limited if the data have already been anonymized or used for research purposes.

Risks: minimal, primarily related to blood collection.

Benefits: participation does not provide a direct medical benefit to you, but it may contribute to research that can help other patients in the future.

• Individual research results are generally not communicated.
• Aggregated research results may be published anonymously.
• If you consent, you may be contacted in the future regarding further research studies.