Establishment of a national registry for the evaluation and improvement of risk-adjusted prevention for hereditary breast and ovarian cancer

Establishment of a national registry for the evaluation and improvement of risk-adjusted prevention for hereditary breast and ovarian cancer - HerediCaRe

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00017837

Enrollment

50000

Registered

2020-06-05

Start date

2020-09-29

Completion date

Unknown

Last updated

2026-03-30

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

C50 C56

Interventions

Group 1: patients and individuals with a genetic predisposition for breast and/or ovarian cancer

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: - fulfilled clinical inclusion criteria for a hereditary burden of breast and/or ovarian cancer - Pathogenic germline variant detected in the familiy - Relevance to therapy (e.g. PARPi) - Needed from another medical point of view

Exclusion criteria

Exclusion criteria: None of the above criteria fulfilled

Design outcomes

Primary

Measure	Time frame
Evaluation and improvement of risk-adjusted prevention for hereditary breast and ovarian cancer on the basis of gene panel tests in an evidence-/ knowledge-generating care concept by 1. the identification of tumour subtypes and subtype specific outcomes of pre-ventive and therapeutic measures, esp. age-specific tumour risks, histological subtype, disease free / progression free / overall survival, quality of life and quality of care, and 2. the development and implementation of a continuous education program based on outcome measures in order to improve risk and genetic literacy of counsellors and counselees.	—

Measure

Time frame

Evaluation and improvement of risk-adjusted prevention for hereditary breast and ovarian cancer on the basis of gene panel tests in an evidence-/ knowledge-generating care concept by 1. the identification of tumour subtypes and subtype specific outcomes of pre-ventive and therapeutic measures, esp. age-specific tumour risks, histological subtype, disease free / progression free / overall survival, quality of life and quality of care, and 2. the development and implementation of a continuous education program based on outcome measures in order to improve risk and genetic literacy of counsellors and counselees.

—

Countries

Germany

Contacts

Public ContactRita Schmutzler

Zentrum Familiärer Brust- und Eierstockkrebs Uniklinikum Köln

rita.schmutzler@uk-koeln.de0049 221 478 86509

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Apr 4, 2026