About us


Message from Chairman 

The past two years had probably been the most surreal two years in the advent of COVID 19. Coronavirus have taken over every angle of everyone‘s life one way or another. Nevertheless, diseases other than COVID 19 should not be overlooked and hence the work of Hong Kong Hereditary Breast Cancer Registry (THE REGISTRY) has never halted despite the reduction of actual on site events. I would like to use this opportunity to update the important work which has been going on despite the difficulties.


Looking back, the availability of genetic testing for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) was lacking in Hong Kong and many Asian countries in 2007. To close this gap, THE REGISTRY was set up and pioneered in the research of HBOC. After 14 years of hard work, we have established one of the most comprehensive databases and bio banks of HBOC in Chinese population.


Foreseeing the importance of knowing more about genetics in HBOC in Chinese ethnicity, THE REGISTRY collects medical information not only from cancer patients but also their family members and such data is important to the research in HBOC. We collaborate with the University of Hong Kong, Hong Kong Sanatorium and Hospital and many worldwide leading centers in different research areas to better understand the risk and causes of HBOC and improve preventative and management options. Over the years, the role of THE REGISTRY has expanded from being a modality for research to supporting more aspects relating to HBOC in Hong Kong.


The Hong Kong SAR Government’s Cancer Expert Working Group on Cancer Prevention and Screening (CEWG) has referenced much of our research work and publications to produce the recommendations for screening for women at increased risk of breast cancer in Hong Kong. Moreover, based on this work I have also had the opportunity to become a member of the Cancer Coordinating Committee Member of Working Group on Colorectal and Breast Cancer Screening for High Risk Groups, Food and Health Bureau.The work of THE REGISTRY has contributed to local health policy making and therefore benefits our community.


Moreover, in the 2020 Policy Address, the Hong Kong SAR Government announced that, based on the revised recommendations of the Cancer Expert Working Group on Cancer Prevention and Screening (CEWG) of the Cancer Coordinating Committee, the Department of Health would adopt a risk-based approach for breast cancer screening. The recommendations of the CEWG were revised taking into consideration available evidence as well as findings of the study on risk factors associated with breast cancer for local women conducted by the University of Hong Kong (HKU) for which I was principle investigator, and completed in 2019.


It is encouraging that the population based Breast Cancer Screening Pilot Programme was rolled out in September 2021 to provide screening services for women at moderate high risk. However, to date there is still need for support of those who are at high risk due to hereditary causes, which is what THE REGISTRY focuses on serving as we strive to obtain more evidence for future support by the government.


THE REGISTRY keeps efforts to maintain medical services for cancer patients. The Free BRCA Ovarian Cancer Drug Programme, launched in 2018, has prolonged the lives of hereditary ovarian cancer patients. It has also provided data for doctors to evaluate the cost effectiveness of the drug giving local medical evidence and aided oncologist to get approval of the use for this PARP inhibitor with partial support for patients’ use in the public hospitals. The duration of the programme has been extended, thanks to the donation from The Joseph Lau Luen Hung Charitable Trust. In hope of benefiting more patients, we are planning a similar programme for BRCA breast cancerpatients in year 2022/2023.


Prevention is always better than cure. To prevent, not only do medical personnel need to keep up to date with the advances, but also the community has the basic knowledge or at least should be aware of the existence of the disease and will seek medical advice early. Hence, we advocate a lot of public education and awareness to improve the knowledge of hereditary cancers in the general public, allowing motivations of self-referrals and training of specialized personnel. Under the new normal of having virtual events, our educational programmes such as Breast Concern Action and Pink Run were rolled out successfully through the online platforms. We are also supporting the establishment of the Master of Medical Science (Genetic Counselling) degree, a first of its kind to increase the number of expertise in this area in our locality.


Last but not least, THE REGISTRY has also established a good clinical flow model for genetic services for Hereditary Breast and Ovarian Cancer in Hong Kong and this year the Hospital Authority has agreed to provide funding to formally set up genetic services to cater for patients with metastatic ovarian cancer which may be related to genetic cause. This is certainly a good start to gain recognition by the government and we look forward to working towards more established public service in the future.


Without your support, the differences and impact THE REGISTRY can achieve would have never flourished. Your donations help those underprivileged patients to access genetic testing and clinical services; also support important research which can be translated into clinical care. We really appreciateyour unfailing support and much so as Hong Kong is still facing challenges, and we look forward to having you as our partners to save more lives of those who are at the highest risk.


Professor Ava Kwong