OVERVIEW

1. Aims

• How many people fall ill with a particular cancer each year (cancer incicidence)?
• Which types of cancer increase, which types of cancer decrease?
• Do screening measures have a noticeable effect?
• Have survival rates of cancer patients increased?
• Are there differences in disease patterns between men and women?
• How frequent is cancer in different age groups?
• Do certain types of cancer cluster?
• How many persons with cancer diagnosed in the last 5 years live in a region?
• Together with other institutions in cancer research: Which factors influence the genesis of cancer?

2. Basic Figures

• Population in the area covered: approximately 4,000,000
• Expected number of new cases per year: approximately 24,200
• Expected cancer deaths per year: approximately 10,700
• Expect notifications per year: approximately 68,000, including multiple notifications which are both possible and desired.
  12,000 death certificates with diagnosis cancer

3. Methods of Notification

• Common notification form for the Cancer Registry Rhineland Palatinate and the after-care institutions of the Panel Doctors Association (Kassenärztliche Vereinigungen) which can be used both for notifying a case to the cancer registry and for documenting after-care
• Electronic data transmission from hospital based registries in oncological centres
• Electronic notification: Currently an electronic notification form is being developped.
• Copies of death certificates from the public health departments

4. Registered Items

• Personal identification data
• Epidemiological data
• Diagnosis (ICD 10)
• Topography and morphology (ICD-O-2)
• Staging (TNM)
• Incidence date
• Most valid basis of diagnosis
• Date and cause of death (when appropriate)

5. Legal Basis

• The state cancer registration law has been in effect since January 1st, 2000. This law essentially continues the regulation of the Federal cancer registration law from 1995 and the state law from 1997.
• The state cancer registration law obliges all doctors to notify new malignancies and their early stages to the cancer registry.
• Patients shall be informed about the notification as early as possible. Information about notification may be postponed if a patient's health requires it. Patients are entitled to object to notification at any time.
• For pathologists there is a special regulation: they have the right to notify, but they are not obliged to do so, as they cannot inform patients directly about notification.

6. Data Privacy

• Encryption of names
• All employees are bound to observe confidentiality.
• Anonymous storage of data
• Deletion of original data after processing
• Additional data may only be ascertained and processed after obtaining consent of the person concerned.