Comparing breast cancer dataset - Sweden vs Flatiron
14 Jun 2019

This blog post has been written with an aim of providing a summary about the availablility and the known strengths and weaknesses of the data in the Swedish breast cancer registry. We also want to draw a comparison between the variables used in the publications coming from the Flatiron dataset and the variables used in the Swedish breast cancer register.

Transparency in data-quality: a necessary parameter  for the use of RWE to support decision making

We believe that transparency plays a critical rolein the quality of the data used for understanding the strengths and weaknesses of the different datasets. The choice of right dataset for the right research question and the consequent possibility of leveraging the strength of each dataset is crucial.

Swedish breast cancer registry:

In the end of this blog-post you have a list of the 165 publications initiated from this registry.

A recent publication “Validation of data quality in the Swedish National Register for Breast Cancer”, an analysis of several parameters have been assessed in order to understand the quality.  Below, we give you a brief glimpse of it

Swedish breast cancer dataset - strengths:

  • High national coverage 99,9
  • High validity with less than 5% of variables missing
  • Vast coverage of diagnostic- and therapeutic processes outcomes
  • Includes both in situ and invasive primary tumours

Swedish breast cancer dataset - weaknesses:

  • The time for data reporting takes up to one year
  • Some variables are poorly reported, such as HER-2 neu or KI65
  • Some variables were not validated such as date of death
  • Inpatient treatment strategy is not included in the register

Insights and awareness about poorly reported variables are crucial in the selection of a potential dataset. For the Swedish dataset, we have a knowledge of variables are well covered in comparison to the ones that are not. But is this knowledge common for other datasets too? Can the quality of every dataset be easily verified?.

The therapeutical compounds that are provided within the hospital premises are poorly captured in the registry and not accessible in the drug registry which only covers prescribed drugs. A fairly complex data-extraction procedure from the hospitals must be employed to capture this information. . This is obviously an important constraint in the outcomes research for new drugs.

The mortality variable is not covered in the assessment of the breast cancer registry since it is captured in another registry which seamlessly can be integrated in RWE research. See prior blog-post.

The Swedish breast cancer registry is a significant resource forresearch. See below list of the publications originated from the registry.

 

Flatiron variables in the Breast cancer publications

We reviewed the variables included in the flatiron studies with the variables available in the Swedish breast cancer registry. Below is a summary of the evaluation.

As the table shows there are some similarities and differences between two datasets which changes their ability to answer a specific question and their utility points in different directions.. Flatiron dataset includes more specific variables which makes it possible to have a better and solid view on what happens throughout the course of breast cancer occurrence and treatment. On the other hand, the Swedish breast cancer register has the ability to be linked to other Swedish national registers which enables a thorough follow up throughout the patients’ life to find potential influencing variables before, during or after the course of breast cancer.   

Publications

Swedish validation study

  • Löfgren 2019, Validation of data quality in the Swedish National Register for Breast Cancer

Flatiron publications included in the review:

  1. Dalvi 2018, A real world evidence study of BRCA mutations and survival in HER2-negative breast cancer (http://cancerres.aacrjournals.org/content/79/4_Supplement/P1-09-13)
  2. Luhn 2018, Time to treatment discontinuation of second-line fulvestrant monotherapy for HR+/HER2− metastatic breast cancer in the real-world setting (http://cancerres.aacrjournals.org/content/79/4_Supplement/P4-13-08)
  3. Rugo 2018, Real-world survival of heavily pretreated patients with refractory HR+, HER2- metastatic breast cancer receiving single-agent chemotherapy - A comparison with MONARCH 1 (http://cancerres.aacrjournals.org/content/79/4_Supplement/P6-18-19)
  4. Saverno 2018, Influence of prognostic factors on outcomes among metastatic breast cancer patients treated with CDK4&6 inhibitors in routine clinical practice (http://cancerres.aacrjournals.org/content/79/4_Supplement/P2-08-38)
  5. Luhn 2018, Outcomes in patients (pts) with metastatic triple-negative breast cancer (mTNBC) treated in second line (2L) in the US real-world setting (http://cancerres.aacrjournals.org/content/79/4_Supplement/P1-14-04)
  6. Luhn 2018, Comparative effectiveness of nab-paclitaxel vs. paclitaxel monotherapy as first-line (1L) treatment of metastatic triple-negative breast cancer (mTNBC) in US clinical practice (https://oncologypro.esmo.org/Meeting-Resources/ESMO-2018-Congress/Comparative-effectiveness-of-nab-paclitaxel-vs.-paclitaxel-monotherapy-as-first-line-1L-treatment-of-metastatic-triple-negative-breast-cancer-mTNBC-in-US-clinical-practice)
  7. Shewad 2018, Real-world (RW) characteristics, treatment (tx) patterns, and overall survival (OS) in US patients (pts) with metastatic breast cancer (mBC) and CNS metastases (CNS mets) (https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.1037)
  8. Quek 2018, Real-world clinical outcomes and treatment patterns among metastatic breast cancer (MBC) patients with germline BRCA mutation (https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.e13075)

All publications from Swedish Breast Cancer Registry (until 2018):

  1. Colleoni M, Luo W, Karlsson P, Chirgwin J, Aebi S, Jerusalem G, et al. Extended adjuvant intermittent letrozole versus continuous letrozole in postmenopausal women with breast cancer (SOLE): a multicentre, open-label, randomised, phase 3 trial. The Lancet Oncology. 2018;19(1):127-38.
  2. Delcoigne B, Hagenbuch N, Schelin ME, Salim A, Lindstrom LS, Bergh J, et al. Feasibility of reusing time-matched controls in an overlapping cohort. Statistical methods in medical research. 2018;27(6):1818-29.
  3. Fahlen M, Zhang H, Lofgren L, Masironi B, E VONS, BO VONS, et al. Expression of Progesterone and Androgen Receptors in the Breast of Premenopausal Women, Considering Menstrual Phase. Anticancer research. 2018;38(3):1499-510.
  4. Foukakis T. Ribociclib in premenopausal women with advanced breast cancer. The Lancet Oncology. 2018.
  5. Foukakis T, Lovrot J, Matikas A, Zerdes I, Lorent J, Tobin N, et al. Immune gene expression and response to chemotherapy in advanced breast cancer. British journal of cancer. 2018;118(4):480- 8.
  6. Kim C, Gao R, Sei E, Brandt R, Hartman J, Hatschek T, et al. Chemoresistance Evolution in Triple-Negative Breast Cancer Delineated by Single-Cell Sequencing. Cell. 2018;173(4):879- 93.e13.
  7. Lundgren C, Lindman H, Rolander B, Ekholm M. Good adherence to adjuvant endocrine therapy in early breast cancer - a population-based study based on the Swedish Prescribed Drug Register. Acta oncologica (Stockholm, Sweden). 2018:1-6.
  8. Majid S, Ryden L, Manjer J. Predictive factors for sentinel node metastases in primary invasive breast cancer: a population-based cohort study of 2552 consecutive patients. World journal of surgical oncology. 2018;16(1):54.
  9. Matikas A, Foukakis T, Bergh J. RE: Receptor Conversion in Distant Breast Cancer Metastases: A Systematic Review and Meta-analysis. Journal of the National Cancer Institute. 2018.
  10. Matikas A, Margolin S, Hellstrom M, Johansson H, Bengtsson NO, Karlsson L, et al. Long-term safety and survival outcomes from the Scandinavian Breast Group 2004-1 randomized phase II trial of tailored dose-dense adjuvant chemotherapy for early breast cancer. Breast cancer research and treatment. 2018;168(2):349-55.
  11. Plate S, Emilsson L, Soderberg M, Brandberg Y, Warnberg F. High experienced continuity in breast cancer care is associated with high health related quality of life. BMC health services research. 2018;18(1):127.
  12. Tegnebratt T, Lu L, Eksborg S, Chireh A, Damberg P, Nikkhou-Aski S, et al. Treatment response assessment with (R)-[(11)CPAQ PET in the MMTV-PyMT mouse model of breast cancer. EJNMMI research. 2018;8(1):25.
  13. Zerdes I, Matikas A, Bergh J, Rassidakis GZ, Foukakis T. Genetic, transcriptional and posttranslational regulation of the programmed death protein ligand 1 in cancer: biology and clinical correlations. Oncogene. 2018.
  14. Abdoli G, Bottai M, Sandelin K, Moradi T. Breast cancer diagnosis and mortality by tumor stage and migration background in a nationwide cohort study in Sweden. Breast (Edinburgh, Scotland). 2017;31:57-65.
  15. Brand JS, Hedayati E, Bhoo-Pathy N, Bergh J, Hall P, Humphreys K, et al. Time-dependent risk and predictors of venous thromboembolism in breast cancer patients: A population-based cohort study. Cancer. 2017;123(3):468-75.
  16. Engqvist Boman L, Sandelin K, Wengstrom Y, Silen C. Patients' learning and understanding during their breast cancer trajectory. Patient education and counseling. 2017;100(5):795-804.
  17. Foukakis T. Kemoterapi och målstyrda läkemedel kan förstärka varandra. 2017 Feb 14;114. pii: EEIS. Swedish: Läkartidningen; 2017.
  18. Foukakis T, Bergh J. Prognostic and predictive factors in early, non-metastatic breast cancer. In: UpToDate, Basow, DS (Ed), UpToDate, Waltham, MA2017.
  19. Fredholm H, Magnusson K, Lindstrom LS, Tobin NP, Lindman H, Bergh J, et al. Breast cancer in young women and prognosis: How important are proliferation markers? European journal of cancer (Oxford, England : 1990). 2017;84:278-89.
  20. Gao R, Kim C, Sei E, Foukakis T, Crosetto N, Chan LK, et al. Nanogrid single-nucleus RNA sequencing reveals phenotypic diversity in breast cancer. Nature communications. 2017;8(1):228.
  21. Li J, Ivansson E, Klevebring D, Tobin NP, Lindstrom LS, Holm J, et al. Molecular Differences between Screen-Detected and Interval Breast Cancers Are Largely Explained by PAM50 Subtypes. Clinical cancer research : an official journal of the American Association for Cancer Research. 2017;23(10):2584-92
  22. Lundberg A, Lindstrom LS, Harrell JC, Falato C, Carlson JW, Wright PK, et al. Gene Expression Signatures and Immunohistochemical Subtypes Add Prognostic Value to Each Other in Breast Cancer Cohorts. Clinical cancer research : an official journal of the American Association for Cancer Research. 2017;23(24):7512-20.
  23. Matikas A, Foukakis T, Bergh J. Dose intense, dose dense and tailored dose adjuvant chemotherapy for early breast cancer: an evolution of concepts. Acta oncologica (Stockholm, Sweden). 2017;56(9):1143-51.
  24. Matikas A, Foukakis T, Bergh J. Tackling endocrine resistance in ER-positive HER2-negative advanced breast cancer: A tale of imprecision medicine. Critical reviews in oncology/hematology. 2017;114:91-101.
  25. Matikas A, Foukakis T, Michalakis I, Georgoulias V. Implementing neoadjuvant endocrine strategies in ER-positive, HER2-negative breast cancer. Expert review of anticancer therapy. 2017;17(4):319-26.
  26. Nakamura M, Zhang Y, Yang Y, Sonmez C, Zheng W, Huang G, et al. Off-tumor targets compromise antiangiogenic drug sensitivity by inducing kidney erythropoietin production. Proceedings of the National Academy of Sciences of the United States of America. 2017;114(45):E9635-e44.
  27. Palazon A, Tyrakis PA, Macias D, Velica P, Rundqvist H, Fitzpatrick S, et al. An HIF1alpha/VEGF-A Axis in Cytotoxic T Cells Regulates Tumor Progression. Cancer cell. 2017;32(5):669-83.e5.
  28. Robertson S, Adolfsson J, Stattin P, Sjovall A, Winnersjo R, Hanning M, et al. Waiting times for cancer patients in Sweden: A nationwide population-based study. Scandinavian journal of public health. 2017;45(3):230-7.
  29. Strand F, Humphreys K, Eriksson M, Li J, Andersson TM, Tornberg S, et al. Longitudinal fluctuation in mammographic percent density differentiates between interval and screen-detected breast cancer. International journal of cancer. 2017;140(1):34-40.
  30. Tobin NP, Lundberg A, Lindstrom LS, Harrell JC, Foukakis T, Carlsson L, et al. PAM50 Provides Prognostic Information When Applied to the Lymph Node Metastases of Advanced Breast Cancer Patients. Clinical cancer research : an official journal of the American Association for Cancer Research. 2017;23(23):7225-31.
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  32. VikhePatil E, Arnesson LG, Fohlin H. Can we predict the risk for non-sentinel node metastases? Results from the Swedish Breast Cancer Registry on 23,053 patients. The Breast. 2017;32:S62-S3.
  33. Yang H, Brand JS, Fang F, Chiesa F, Johansson AL, Hall P, et al. Time-dependent risk of depression, anxiety, and stress-related disorders in patients with invasive and in situ breast cancer. International journal of cancer. 2017;140(4):841-52.
  34. Bondesson T, Petersson LM, Wennman-Larsen A, Alexanderson K, Kjeldgard L, Nilsson MI. A study to examine the influence of health professionals' advice and support on work capacity and sick leave after breast cancer surgery. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2016;24(10):4141-8
  35. Brand JS, Colzani E, Johansson ALV, Giesecke J, Clements M, Bergh J, et al. Infection-related hospitalizations in breast cancer patients: Risk and impact on prognosis. The Journal of infection. 2016;72(6):650-8.
  36. Colzani E, Clements M, Johansson AL, Liljegren A, He W, Brand J, et al. Risk of hospitalisation and death due to bone fractures after breast cancer: a registry-based cohort study. British journal of cancer. 2016;115(11):1400-7.
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  39. Falato C, Tobin NP, Lorent J, Lindstrom LS, Bergh J, Foukakis T. Intrinsic subtypes and genomic signatures of primary breast cancer and prognosis after systemic relapse. Molecular oncology. 2016;10(4):517-25.
  40. Foukakis T, Falato C, Bergh J. A 21-Gene Expression Assay in Breast Cancer. The New England journal of medicine. 2016;374(14):1386-7.
  41. Foukakis T, von Minckwitz G, Bengtsson NO, Brandberg Y, Wallberg B, Fornander T, et al. Effect of Tailored Dose-Dense Chemotherapy vs Standard 3-Weekly Adjuvant Chemotherapy on Recurrence-Free Survival Among Women With High-Risk Early Breast Cancer: A Randomized Clinical Trial. Jama. 2016;316(18):1888-96.
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  44. Gabrielson M, Chiesa F, Paulsson J, Strell C, Behmer C, Ronnow K, et al. Amount of stroma is associated with mammographic density and stromal expression of oestrogen receptor in normal breast tissues. Breast cancer research and treatment. 2016;158(2):253-61.
  45. Gondos A, Jansen L, Heil J, Schneeweiss A, Voogd AC, Frisell J, et al. Time trends in axilla management among early breast cancer patients: Persisting major variation in clinical practice across European centers. Acta oncologica (Stockholm, Sweden). 2016;55(6):712-9.
  46. Hilborn E, Gacic J, Fornander T, Nordenskjold B, Stal O, Jansson A. Androgen receptor expression predicts beneficial tamoxifen response in oestrogen receptor-alpha-negative breast cancer. British journal of cancer. 2016;114(3):248-55.
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  49. Li J, Holm J, Bergh J, Eriksson M, Darabi H, Lindstrom LS, et al. Breast cancer genetic risk profile is differentially associated with interval and screen-detected breast cancers. Annals of oncology : official journal of the European Society for Medical Oncology. 2016;27(6):1181.
  50. Li J, Humphreys K, Eriksson M, Dar H, Brandberg Y, Hall P, et al. Worse quality of life in young and recently diagnosed breast cancer survivors compared with female survivors of other cancers: A cross-sectional study. International journal of cancer. 2016;139(11):2415-25.
  51. Lindblad C, Sandelin K, Petersson LM, Rohani C, Langius-Eklof A. Stability of the 13-item sense of coherence (SOC) scale: a longitudinal prospective study in women treated for breast cancer. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2016;25(3):753-60.
  52. Lu Y, Segelman J, Nordgren A, Lindstrom L, Frisell J, Martling A. Increased risk of colorectal cancer in patients diagnosed with breast cancer in women. Cancer epidemiology. 2016;41:57-62.
  53. Manna S, Bostner J, Sun Y, Miller LD, Alayev A, Schwartz NS, et al. ERRalpha Is a Marker of Tamoxifen Response and Survival in Triple-Negative Breast Cancer. Clinical cancer research: an official journal of the American Association for Cancer Research. 2016;22(6):1421-31.
  54. Nilsson MI, Saboonchi F, Alexanderson K, Olsson M, Wennman-Larsen A, Petersson LM. Changes in importance of work and vocational satisfaction during the 2 years after breast cancer surgery and factors associated with this. Journal of cancer survivorship : research and practice. 2016;10(3):564-72
  55. Nordenskjold A, Fohlin H, Fornander T, Lofdahl B, Skoog L, Stal O. Progesterone receptor positivity is a predictor of long-term benefit from adjuvant tamoxifen treatment of estrogen receptor positive breast cancer. Breast cancer research and treatment. 2016;160(2):313-22.
  56. Papakonstantinou A, Foukakis T, Rodriguez-Wallberg KA, Bergh J. Is Estradiol Monitoring Necessary in Women Receiving Ovarian Suppression for Breast Cancer? Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2016;34(14):1573-9.
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  60. Valachis A, Garmo H, Weinman J, Fredriksson I, Ahlgren J, Sund M, et al. Effect of selective serotonin reuptake inhibitors use on endocrine therapy adherence and breast cancer mortality: a population-based study. Breast cancer research and treatment. 2016;159(2):293-303.
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