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chairman

Message from Chairman 

This year is the 10 year anniversary of The Hong Kong Hereditary Breast Cancer Family Registry which was established in 2007.  Breast cancer is not a disease unknown to many, but in 2007, although Risk Assessment and Genetic testing was considered standard of care in the West for suitable Breast and Ovarian cancer patients, availability of genetic testing for Hereditary Breast and Ovarian Cancer Syndrome (HBOC) was still very much lacking in Hong Kong and many Asian countries, not to mention that there is no research on HBOC in Chinese at the time. It is this gap that we have in both the availability of the testing and the lack of knowledge of the syndrome in our locality that the Hong Kong Hereditary Breast Cancer Family Registry was started. The initial idea of the “Family Registry” was set up for collection of data and research materials in Hong Kong. This concept was new in Asia where Cancer Registry which has been set up only to collect medical information on the cancer patients and not the family members, and certainly there were no such registry which was catering for research in HBOC. The support of the set up was based on the National Institute of Cancer funding, a governmental based research grant system which supported the idea of setting up a “ Family Registry ” in this area in Hong Kong, an uncommonly funded type of international project, foreseeing the importance of knowing more about genetics in HBOC in Chinese ethnicity. It was after the setup of this research that the Registry work has brought more gaps in our locality to light. Not only was there a lack of research information but generally there was minimal awareness about HBOC, lack of expertise in the area and fund support of genetic testing and management of these high risk families. This has enticed the Registry to eventually become registered as a Charitable organization so that apart from just being a modality for research, the organization will be able to support more aspects relating to HBOC in the region.

The main mission of the Hong Kong Hereditary Breast Cancer Registry then evolved around “We Care, We Help, We Change”. We support underprivileged families for genetic testing for families at risk of breast, ovarian and prostate cancer. Most of these families also agreed to join the Registry’s database, not only as a donation of information for research but also understanding that the world of genetics evolves rapidly and hence the “Registry” would be constantly monitoring the progress and changes and where clinical interventions or new genetic advances allows new testing and results, these families can be contacted for further appropriate management.

Prevention is always better than cure, but to prevent not only do medical personnel need to keep up to date with the advances, it is important that the community has the basic knowledge or at least be aware that HBOC exist and hence will be able to initiate seeking medical advice early. Hence we advocate a lot of public education and awareness to improve knowledge of hereditary cancers allowing motivations of self-referrals and also training of personnel to specialize in the area.

In collaboration with The University of Hong Kong and Hong Kong Sanatorium and Hospital, the Registry is pioneering research in Chinese populations, establishing one of the largest Chinese Hereditary Breast Cancer Family database which is now world recognized and working with worldwide leading centers to perform research international to better understand risk and cause of breast cancer and improve preventative and management options. Our research also means that we are able to constantly validate the testing accuracy of the testing not only in Caucasians but also increase its accuracy in Chinese and Asian cohorts. Based on our research and publications, the Hong Kong Government’s Cancer Expert Working Group on Cancer Prevention and Screening (CEWG)’s have referenced much of our work 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 of the Food and Health Bureau of The Government of Hong Kong Special Administrative Region, where hopefully the work of the Registry can contribute to the Health Policy making and therefore benefiting our population.

The advances and improvement of genetic testing efficiency also means that we can expand the work of the Registry. We have expanded in testing for more genes on our gene panel and supporting total body MRI scans as an early screening tool for TP53 mutations carriers, an endeavor to families who could get not only breast cancer but also sarcomas, leukaemia and brain tumors which can also occur in the childhood. With the kick off of this programme we are working hand in hand with Paediatricians at The University of Hong Kong to take better care of families with hereditary mutations which can result in breast cancer and also cancers in children.

Apart from advocating prevention and early diagnosis, a NEW indication for BRCA mutation testing has changed the world‘s approach to genetic testing and your donations have started the support of this drug programme. A targeted drug known as the Parp Inhibitor targets ovarian cancer patients with BRCA mutations can prolong lives of ovarian cancer patients. There is new data supporting its use in breast cancer BRCA mutation carriers and it will not be long that hereditary breast cancer patients will also benefit in its use.

Moreover High Risk Screening programme is still not completely supplemented by the government sector and hence this year we plan to raise funds for a NEW programme to guarantee that these families can receive the screening for early cancer detection thus a much better prognosis.

The  donations from loyal supporters such as yourselves therefore have helped not only those who cannot afford to have genetic testing but also contributed to important research which can immediately translate to clinical care. New clinical programmes can now be supported after laying down such an important 10 year foundation. Without your support the differences and impact the Registry can achieve would have never flourished.

We would like to ask you to join us to continue in supporting this work. The Registry really appreciates your unfailing support and we look forward to have you as our partners once again to save more lives of those at the highest risk.

Indeed a 10 year anniversary just means the laying down of a good solid foundation for another 10 years of better work. I sincerely thank all our donors for being part of this solid foundation and together we can create another 10 years of miracles to create a garden of knowledge to make a difference to future management of these high risk families.

Dr. Ava Kwong