Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome

Cooperation network for the provision of local care for patients and families with a genetic tumour risk syndrome - OnkoRiskNET

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

DRKS

Registry ID

DRKS00026679

Enrollment

2000

Registered

2021-12-01

Start date

2022-01-02

Completion date

Unknown

Last updated

2025-04-07

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

Conditions

Genetic Tumour Risk Syndromes

Interventions

Group 1: Control group: care according to standard care. Collection of medical data, sociodemographic data, questionnaire regarding factors influencing the use of telemedical consultation, GCSS, VSQ,

specially trained case managers process the documents. Medical evaluation of the medical data and case conference Telemedical genetic counseling and written summary for oncologist / patient Genetic ex

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: 1. patients of participating oncology practices 2. written consent to participate in the health services research study 3. age = 18 years 4. have been diagnosed with a tumor disease within 36 months prior to inclusion and have a history of a tumor risk syndrome

Exclusion criteria

Exclusion criteria: - Patients with a history of hereditary breast and/or ovarian cancer (established treatment pathways already exist). - Minor patients - Patients with a history of sporadic tumors - Privately insured patients (SHI project)

Design outcomes

Primary

Measure	Time frame
Utilization of human genetic counseling and diagnostics (Comparison of recommendations/referral for genetic counseling by oncologists and genetic counseling actually performed).)	—

Secondary

Measure	Time frame
1. patient satisfaction with human genetic counseling (VSQ). 2. psychological distress / evaluation of factors influencing utilization of telemedical counseling (self-administered questionnaire on factors influencing utilization and experience of genetic counseling, including GCSS, GCOS, MICRA, UTAUT2, etc.). 3. utilization of genetic counseling by other family members (analogous to primary endpoint). 4. satisfaction of oncologists with structured treatment pathway (qualitative interviews, NASA TLX) 5. cost-effectiveness compared to standard care (During the project, a cost-reporting questionnaire will be created to capture direct medical (fees and co-payments, etc.), direct non-medical costs (transportation costs, etc.), and indirect costs (opportunity costs estimated by productivity loss of lost work time). The questionnaire is filled out by the patients).	—

Measure

Time frame

1. patient satisfaction with human genetic counseling (VSQ). 2. psychological distress / evaluation of factors influencing utilization of telemedical counseling (self-administered questionnaire on factors influencing utilization and experience of genetic counseling, including GCSS, GCOS, MICRA, UTAUT2, etc.). 3. utilization of genetic counseling by other family members (analogous to primary endpoint). 4. satisfaction of oncologists with structured treatment pathway (qualitative interviews, NASA TLX) 5. cost-effectiveness compared to standard care (During the project, a cost-reporting questionnaire will be created to capture direct medical (fees and co-payments, etc.), direct non-medical costs (transportation costs, etc.), and indirect costs (opportunity costs estimated by productivity loss of lost work time). The questionnaire is filled out by the patients).

—

Countries

Germany

Contacts

Public ContactJohanna Tecklenburg

Medizinische Hochschule HannoverInstitut für Humangenetik

johanna.tecklenburg@gmail.com0511 532 9827

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 17, 2026