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Cancer Genetics Clinic Registry

An Ambispective Registry of genetic testing, compliance to cancer prevention recommendations, and outcomes of patients registered in the cancer genetics clinic (CGC Registry) - CGC Registry

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
CTRI
Registry ID
CTRI/2023/03/050568
Enrollment
16500
Registered
2023-03-10
Start date
Unknown
Completion date
Unknown
Last updated
2023-04-03

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

Conditions

Health Condition 1: C419- Malignant neoplasm of bone and articular cartilage, unspecified Health Condition 2: C509- Malignant neoplasm of breast of unspecified site Health Condition 3: C729- Malignant neoplasm of central nervous system, unspecified Health Condition 4: C499- Malignant neoplasm of connective and soft tissue, unspecified Health Condition 5: C759- Malignant neoplasm of endocrine gland, unspecified Health Condition 6: C579- Malignant neoplasm of female genital organ, unspecified Heal

Interventions

None listed

Sponsors

Tata Memorial Centre
Lead Sponsor

Eligibility

Inclusion criteria

Inclusion criteria: i. All patients and family members registered at the TMC cancer genetics clinic ii. After genetic counselling, germline genetic testing was recommended iii. Pedigree and genetic testing information is available in the Confidential Cancer Genetics Clinic Records created and maintained by the PI

Exclusion criteria

Exclusion criteria: i. All patients for whom pedigree information is not available in the CGC case record files maintained by the PI

Design outcomes

Primary

MeasureTime frame
Study trends in the type of germline genetic testing opted by patients registered in the cancer genetics clinicTimepoint: 14 year trends

Secondary

MeasureTime frame
a. Establish the patient, demographic, socio-economic and disease factors determining the uptake of genetic testing among those who were registered in the cancer genetics clinicTimepoint: 2003 -2025;b. Establishing the life-time cumulative risk of developing specific cancers among carriers of germline genetic variants for genes like BRCA1/2, MMR, TP53, STK-11Timepoint: Lifetime cumulative risk upto age 80 years;c. To report the common cancers type and histologies associated with specific gene mutationsTimepoint: 2003- 2025;d. To report the moderate to severe treatment related toxicities among mutation carriers undergoing cancer treatment using the CTCAE v 5.0 for late toxicities and RTOG/ EORTC for acute toxicities (1995)Timepoint: 2003-2025;e. To report disease-free, progression-free and overall survival at 1, 2, 3 and 5-years in carriers of specific gene mutationsTimepoint: 1, 2, 3 and 5-years;f. To report lifetime cumulative incidence, and time to development of 2nd, 3rd and 4th cancers for carriers of specific gene mutationsTimepoint: 2003-2025;g. To report compliance to recommendations using the clinician rating scale such as i. To evaluate the proportion of at-risk family members with whom the genetic test results are disclosed ii. To evaluate the proportion of eligible relatives that are tested for family specific pathogenic variants iii. To evaluate the proportion of mutation carriers being compliant to preventive surgery recommendation made during post-test counselling in mutation carriers iv. To evaluate the proportion of mutation carriers being compliant to the recommended screening investigations v. Proportion of mutation carriers opting for chemoprevention (Tamoxifen, Aspirin etc), and compliance to chemoprevention among themTimepoint: 2003-2025

Countries

India

Contacts

Public ContactRima Pathak

Tata Memorial Centre

drrajivsarin@gmail.com9820313789

Outcome results

None listed

Source: CTRI (via WHO ICTRP) · Data processed: Feb 4, 2026