What has made the BCR the most comprehensive and representative registry on breast cancer?

As of December 2017, the BCR had signed up over 20,000 breast cancer patients and survivors and has the most extensive coverage in the territory. Participating hospitals and clinics include 45 private hospitals and clinics, five oncology departments and nine breast surgery centres of public hospitals. The more patients, hospitals and clinics participate, the more representative the Registry would be.


Why is the HKBCR important to breast cancer research and treatment?
With the absence of local breast cancer data, medical professionals in Hong Kong had mainly relied on Western data for treatment of breast cancer patients in Hong Kong. Through the compilation of information on local breast cancer cases, the HKBCR will be able to provide our organisation, medical practitioners, public policy makers and the general public with insights to breast cancer cases in Hong Kong, enable doctors to consider a range of risk factors, offer recommendations for prevention, breast screening and examination, as well as treatment and care solutions. Moreover, the HKBCR helps raise public concern for breast cancer and can assist the HKSAR Government to shape comprehensive and appropriate healthcare policies to lessen the burden on patients and society at large.


How does the HKBCR work?
The BCR staff visit the participating sites to approach those affected by breast cancer. Upon their consent, we collect:

Part 1: Demographic, lifestyle, health background and breast screening habits;

Part 2: Cancer characteristics and treatment-related data abstracted from medical files;

Part  3: Psychosocial and physical impact of treatments.

All data captured is then entered into a centralised database, with individual identities encrypted.  An aggregate analysis is conducted without making reference to any individual identity.  The BCR will follow up annually to keep track of the clinical outcome of treatments they received.


How is the privacy of participants guaranteed?
We pledge to handle all data submitted to the BCR in compliance with Hong Kong’s Personal Data (Privacy) Ordinance, and our data officers and medical researchers will process patient data with strict confidentiality. Only the patients, their doctors-in-charge and authorised personnel can retrieve or amend personal information submitted to the BCR. All data will solely be used for analysis in aggregate, and will not be used for any other purposes.


How are the data useful in local breast cancer research?

The findings of the BCR (published in the annual report and in Bulletin) will serve as a reference for medical professionals specialised in breast cancer treatments and stakeholders who are concerned with local breast cancer status. The BCR report will give insights on the screening habit, survival and recurrence of local breast cancer patients.

In the long run, we hope to facilitate further researches on cancer prevention, early detection and more effective treatment.


In what ways can you get involved?

Breast cancer patients/survivors:

Please register with the BCR to provide data for analysis and research on breast cancer.

Medical professionals:

You can help by contributing your expertise and time to the BCR by becoming volunteers. We request you to help us display the BCR posters and copies of this leaflet at your clinic; encourage interested patients to fill out the Consent Form and questionnaires when attending your clinic/centre.

General public:

You can support by making a donation to support the work of the BCR, or become a volunteer with us.


What is the role of a participating hospital/clinic?

Through collaboration with the BCR, a participating hospital/clinic does not only facilitate the BCR to collect data from breast cancer patients for critical analysis, but also has an opportunity to review the outcome of its own patients for further analytical purpose.


Are there similar databases in Hong Kong?

There are several databases which capture breast cancer data in the territory. The Hong Kong Cancer Registry operated by the Hospital Authority serves as the centralised cancer registry covering all cancer cases at public hospitals. It provides population-based statistics on incidence rate and mortality rate. The Hong Kong Hereditary Breast Cancer Family Registry, a non-government organisation collects genetic screening data from high-risk hereditary breast cancer patients and their families.

The BCR is a pioneer in collecting comprehensive and patient-centric data on local breast cancer cases at both public and private medical facilities. Information captured ranges from risk factor identification, to diagnostic method, disease and treatment trends, relapse and survival rates, physical and psychosocial effects of cancer and treatment on patients.  All are essential for future research for better breast cancer care.


Why do I need to fill in personal particulars such as name, HKID number, phone number, address, etc. when I join the HKBCR?

The name and HKID number of the patients provide a unique identifier that ensures the data collected is collated correctly. Other personal contact information, such as telephone number, address, and so on are used to obtain updates from participants at regular intervals. Rest assured that access to your personal information is highly restricted.


If my address/ telephone number has changed, do I need to update my personal particulars with the HKBCR?
It would be extremely helpful if you can advise us on any changes to your contact information. The success of the HKBCR relies on the continuous support and cooperation of all participants.  To update us on your personal information changes, please download and complete the form, and return to us by fax, email or post. 

Change of Personal Information Form


How do you dispose the collected data when the study is completed? 
The collected data will be retained.  The collected breast cancer relating information, including patients’ age and health condition, size and nature of the tumours, and treatment results, provide important data for various scientific/medical research. The HKBCR is committed to the long-term follow up on each registrant’s disease and treatment status and the information is kept for further and/ or long-term research.


What should I do if I want to withdraw from the Hong Kong Breast Cancer Registry?
If, for any reason, a participant wishes to withdraw their registration from the HKBCR, please notify us by completing the “Withdrawal Form” and returning it to us by email, fax or post. We shall cease to collect your data from the time of de-registration. Nevertheless, the information collected prior your withdrawal will be retained for future research and analyses by the HKBCR. 
Your continued participation is important to us, if you would like to re-register with the HKBCR and continue to contribute your valuable data to this meaningful project, please complete and return the “ Re-activation Form”.