Karma is the world’s best-characterised breast cancer cohort aiming to reduce the mortality and incidence in breast cancer through translational research focusing on breast cancer prevention. Karma collects data and bio-samples each time a participating woman comes for mammography screening or clinical mammography at participating hospitals. This typically happens every 18 to 24 months. For women diagnosed with breast cancer additional bio-samples are collected (at selected hospitals only). Furthermore, the Karma cohort is updated with data from Swedish quality registers every 6 months.
Listed below is some of the information and data that has been collected in Karma:
Karma Baseline Questionnaire
All study participants responds to the Karma on-line questionnaire. The questionnaire is very comprehensive with more than 250 questions covering key breast cancer related areas, i.e. background (5 questions), reproductive health (18), hormone replacement therapy (5), medication (2), alcohol and tobacco (12), diseases and treatments (28), heredity (35), quality of life (46), physical activity (15), and diet (90).
Karma Baseline Questionnaire (online version, codebook)
Karma In Person Test – blood sampling and blood pressure
Karma collects blood each time a woman who participates in Karma comes for their regular mammography screening or comes for a clinical mammography. This typically happens every 18 to 24 months. Karma also collects additional bio-samples among women who are diagnosed with breast cancer (at selected hospitals only). The Karma personal also measures the blood pressure (diastolic and systolic) for every study participant on each of their visits. Karma In Person Test
Karma Biobank
All participants donate two 10 ml EDTA blood samples and one 4 ml EDTA blood sample each time they visit a Karma unit for In Person Test. The blood is handled in accordance with a strict 30 hour protocol, which makes advanced blood analysis (OMICS) possible. The blood samples are processed in the biobank and aliquoted into 16 plasma aliquots (each 250 microliters), one aliquot of extracted DNA, and two aliquots of whole blood. Karma Biobank
Karma Imaging Sampling
Karma collects all RAW and processed mammographic images available from the study participants (participating in the Swedish mammography program). The images are further processed in Karma for calculation of breast density. Karma Imaging
The Karma core variables are a set of commonly used analysis variables picked from the Karma datasets. The dataset includes usseful information on demography, length/weight/bodyshape, reproductive health, use of painkillers, alcohol and tobacco, breast diseases and cancer, other diseases and cancer, cancer in family, BRCA mutation, quality of life, physical activity, and energy kcal intake. The dataset also holds variables on Karma unit performing the blood sampling, biobank aliquot saldo, imaging breast density scoring, breast cancer risk scoring, and cancer prevalence/incidence numbers. Karma Core Variables
NKBC Register for Breast Cancer (new INCA)
The NKBC (National Quality Breast Cancer) register is the new reconstructed INCA register (information network for cancer treatment). Karma holds breast cancer records for all Karma study participants who have been diagnosed with breast cancer as a primary diagnosis. The register documents the chain of hospitalized treatments from the first time of cancer diagnosis to cases with cancer relapses or decease. The register is restricted to information on the first breast diagnosed with cancer and is restricted to invasive cancer, in situ cancer and carcinosarcoma. Women with Phyllodes tumors, sarcoma, lymphoma or radiation-induced angiosarcoma are not included in the register. The register does not include information of deceased women where and an autopsy was performed.
The register includes initial contact and follow-up information of the women on diagnosis, pre-surgical diagnostics, occurrences of tumors, kind of surgery performed, and treatment/diagnostic latencies. It also includes information on short/long term complication and relapses in relation to treatments, patient satisfaction, and cosmetics. NKBC Breast Cancer Register (2019-) INCA Breast Cancer Register (2007-2018)
RCC STHLM Register for Breast Cancer
The RCC STHLM register holds the historic data of INCA (information network for cancer treatment) up to year 2007. Karma holds breast cancer records for all Karma study participants diagnosed with breast cancer as a primary diagnosis. The register documents the chain of hospitalized treatments from first cancer diagnosis to cases with cancer relapses or decease. The register includes information on pre-surgical diagnostics, as well as occurrences of tumours, kind of surgery performed, and treatment/diagnostic latencies. It also includes information on short/long term complication and relapses. RCC STHLM Breast Cancer Register
Swedish Cancer Register
Karma holds records from The Swedish Cancer Register (founded in 1958) for all Karma study participants. Examples of information found in the register are clinical stage of tumor and histological type. Swedish Cancer Register
National Cause-of-Death Register
Karma holds records from The National Cause-of-Death Register (founded in 1961) and update the records on quarterly basis. The register includes main and multiple causes of death. National Cause-of-Death Register
National Prescription Register
Karma holds records from the National Prescription Register (2005 and later) for all study participants. Examples of information found in the register are ATC code, brand name, and prescribed dose. National Prescription Register
National In-Patient Register
Karma holds records from the National In-Patient Register (founded in the 1960s, 99% coverage) for all study participants. Examples of in-depth information found in the register are main and secondary diagnoses for hospitalization, and surgical codes for both in-patient and day surgery. National In-Patient Register
National Out-Patient Register
Karma holds records from the National Out-Patient Register (2001 and later) for all study participants. Examples of in-depth information found in the register are main and secondary diagnoses for hospitalization, and surgical codes for both out-patient and day surgery. National Out-Patient Register
Karma Tissue Sampling
Karma collects and biobanks (fresh frozen and RNAlater) normal- and tumor tissue from all study participants diagnosed with breast cancer at Södersjukhuset in Stockholm. Up-front gene expression analysis is performed for each patient, and blood is drawn (resulting in 32 aliquots x 250 microliters) before and after surgery.
The SCB multigeneration register is a register over individuals and their biological parents, siblings, and children linked together. The register includes index persons officially registered in Sweden since 1961 and are born 1932 or later. The register also includes their parents, siblings, and children. Index persons with adoptive parents are also included in the register.
SCB Multigeneration register
Karma calculates the BOADICEA (Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm) scoring and the TYRER-CUZICK scoring based on the data Karma collects from the study participants responding to a web based questionnaire. BOADICEA and TYRER-CUZICK calculates the individual/population risk of developing breast/ovarian cancer based on familial history and lifestyle factors. BOADICEA & TYRER-CUZICK scoring
KARISMA is a clinical dose determination trial to identify the lowest dose of tamoxifen that has fewest side effects without lowering the medication effect of reducing breast cancer incidence. Tamoxifen is a well established medication for prevention of breast cancer. Breast cancer incidence is reduced by approximately half, but the standard dose of 20 mg causes side effects. Most common side effects are flashes and sweatings. The KARISMA trial recruited 1,440 women in Sweden at South General Hospiotal among women who attended mammography screening. Women were randomized into 20 mg, 10 mg, 5 mg, 2.5 mg, 1 mg, and placebo. The main outcome is mammographic density reduction as a marker of risk reducing effect. The following data is available: Baseline survey Follow-up symptom survey Corevariables Extended datasets