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Comprehensive Young Age Breast Cancer registry from clinical, genomics, and patient-reported outcomes measured with 15 years follow-up: the CHARM cohort profile

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Abstract

Background

In recognition of the distinct clinical challenges and research gaps in young breast cancer (YBC) patients, we established the Comprehensive Young Age Breast Cancer (CHARM) registry to collect prospective data.

Methods

This prospective cohort included patients who were newly diagnosed with histologically confirmed breast cancer without prior treatment at the Samsung Medical Center (SMC) in April 2013. We included patients who were either 40 years old or younger at the time of diagnosis, pregnant at breast cancer diagnosis or diagnosed with breast cancer within 1 year of delivery. All data were collected using Medidata’s Rave Electronic Data. Clinical data were obtained from electronic medical records. Two experienced pathologists reviewed the pathologic data. Bone mineral densitometry tests have been conducted annually. To obtain multi-omics data, tumor tissues and blood samples were prospectively collected from consenting patients in the registry during surgery. The fertility-related factor also collected collaborated with the Department of Obstetrics and Gynecology. Anti-Müllerian hormone, estradiol, follicle-stimulating hormone, and luteinizing hormone levels were measured using an additional blood sample from baseline to last follow-up. Patient-reported outcomes were assessed using mobile questionnaires.

Results

A total of 1868 participants were included in the SMC YBC study. The average (standard deviation) age was 35.57 (3.79) and 99.8% of the participants were premenopausal. Among them, 1062 participants completed the PRO questionnaires.

Conclusions

The SMC YBC cohort serves as a comprehensive registry for YBC to optimize care and improve knowledge regarding the management of YBC.

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Data availability

The data that support the findings of this study are available on request from the corresponding author (YHP).

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Funding

This study was supported by Future Medicine 2030 Project of the Samsung Medical Center [SMO1230451].

Author information

Author notes

  1. Danbee Kang and Seri Park have contributed equally to this work.

Authors and Affiliations

  1. Department of Clinical Research Design and Evaluation SAIHST, Sungkyunkwan University, 115 Irwon-ro, Gangnam, Seoul, 06335, South Korea

    Danbee Kang, Jiseon Lee, Jiyoon Han & Juhee Cho

  2. Center for Clinical Epidemiology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, 06351, South Korea

    Danbee Kang, Jiseon Lee, Jiyoon Han & Juhee Cho

  3. Department of Health Sciences and Technology, SAIHST, Sungkyunkwan University, Seoul, 06351, South Korea

    Seri Park & Yeon Hee Park

  4. Department of Digital Health, SAIHST, Sungkyunkwan University, Seoul, 06351, South Korea

    Hyo Jung Kim

  5. Research Institution for Future Medicine, Samsung Medical Center, Seoul, 06351, South Korea

    Hyo Jung Kim

  6. Division of Breast Surgery, Department of Surgery, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, 06351, South Korea

    Seok Won Kim, Jeong Eon Lee, Jonghan Yu, Se Kyung Lee & Seok Jin Nam

  7. Division of Hematology-Oncology, Department of Internal Medicine, Samsung Medical Center, Sungkyunkwan University School of Medicine, 50 Ilwon-dong Kangnam-gu, Seoul, 135-710, South Korea

    Ji-Yeon Kim & Yeon Hee Park

Authors
  1. Danbee Kang
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  2. Seri Park
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  3. Hyo Jung Kim
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  10. Ji-Yeon Kim
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  11. Seok Jin Nam
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  12. Juhee Cho
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  13. Yeon Hee Park
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Danbee Kang, Seri Park, Juhee Cho, and Yeon Hee Park. The first draft of the manuscript was written by Danbee Kang and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding authors

Correspondence to Juhee Cho or Yeon Hee Park.

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Conflict of interest

The authors have no relevant financial or non-financial interests to disclose.

Ethical approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of SMC (SMC 2013-04-005) and registered with the clinical trial registry system (clinicaltrial.gov: NCT03131089).

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Kang, D., Park, S., Kim, H.J. et al. Comprehensive Young Age Breast Cancer registry from clinical, genomics, and patient-reported outcomes measured with 15 years follow-up: the CHARM cohort profile. Breast Cancer 31, 467–475 (2024). https://doi.org/10.1007/s12282-024-01559-5

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