Message from Chairman
Hong Kong Hereditary Breast Cancer Family Registry (THE REGISTRY) is celebrating the 15th anniversary this year. I would like to take this opportunity to summarize the important achievements made by THE REGISTRY.
Our work started over a decade ago in 2007 when genetic testing for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) was not yet available in Hong Kong and many Asian countries. THE REGISTRY was the first and only biobank of hereditary breast cancers specimens in Chinese and pioneered in the research of HBOC. THE REGISTRY collects medical information not only from cancer patients but also their family members. We now have one of the most comprehensive databases and bio banks of HBOC in Chinese population.
We have achieved remarkable result in the study of mutation landscape in hereditary breast cancer patients, which led to the identification of six founder mutations and many new mutations in Chinese. Besides, we developed and implemented the multigene panel in clinical practice for precision medicine. We collaborate with the University of Hong Kong (HKU), 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. The Registry is much referenced by international centres when information is needed on patients of Chinese ancestry worldwide. The HKU research based clinic was used as a model to set up an HA funded high-risk genetic clinic this year in 2022 that women who have hereditary ovarian cancers to get genetic testing and also targeted therapy treatment.
In addition, the work of THE REGISTRY has made impact on local health policy making and therefore benefits our community. 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.
Since 2020, the Department of Health had adopted a risk-based approach for breast cancer screening. The recommendations 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 HKU for which I was co- investigator, and completed in 2019.
In September 2021, a population based Breast Cancer Screening Pilot Programme was rolled out 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 and collection of local data to try to ask for future support by the government.
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. There is also good clinical trial evidence that this group of targeted therapy benefits breast cancer patients. This is unfortunately still not funded by the government. In hope of benefiting more patients, we are planning a similar programme for BRCA breast cancerpatients soon and we would indeed need the support of our loyal donors and patrons so we can start this programme in year 2023.
Prevention is always better than cure. Hence, we advocate a lot of public education and awareness to improve the knowledge of hereditary cancers in the general public through online and offline campaigns such as Breast Concern Action and Pink Run, allowing motivations of self-referrals.
We are also supporting the establishment of the Master of Medical Science (Genetic Counselling) degree at the University of Hong Kong, the first Master degree in this area in Hong Kong, so that we can contribute to the education to increase the number of expertise in this area in our locality.
Most importantly, THE REGISTRY has also established a good clinical flow model for genetic services for Hereditary Breast and Ovarian Cancer in Hong Kong and the Hospital Authority provided 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 expansion of this public service to cover more patients groups and individuals who are at genetic risk in the future.
Without your support, the differences and impact THE REGISTRY can achieve would have never flourished. Your donations help thoseunderprivileged patients to access genetic testing and clinical services; the funds also support important research which can be translated into clinical care. This year, we would like to focus on funding for three programmes, namely High-Risk Breast Surveillance Programme, Breast Cancer Drug Programme and TP53 Love Follows Assistance Programme. We deeply believe that these programmes which to date still has no government fund support, can generate great impact on the lives of cancer patients due to hereditary predisposition We really appreciate your 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.
May I take this opportunity to wish everyone a Merry Christmas, Happy New Year and most importantly Good Health!
Professor Ava Kwong