Frequently Asked Questions
Unfortunately, despite the significant advances in breast cancer treatments, breast cancer is not yet eradicated. Breast cancer is the second most common cancer in the world and, by far, the most frequent cancer among women. In 2012 an estimated 1.67 million new breast cancer cases were diagnosed (25% of all cancers). A woman’s chance of being diagnosed in her lifetime is 1 in 8. Over 520.000 women died of breast cancer in 2012, or one woman every 60 seconds. (Source: Globocan 2012).
Thanks to genetic research directed at cancer cells over the last decade, we now understand that breast cancer is not one single disease, but at least ten different types. We also know that all patients are different and require a unique treatment approach. New diagnostic tools for genetic analysis, combined with new targeted therapies based on cancer sub-type, are enabling more personalised, effective treatments for individual patients. This, in turn, improves patient survival and quality of life.
While breast cancer is certainly more common among women, men can be affected too. Men represent less than 1% of all breast cancer cases. Evidence has shown that younger women are increasingly being affected by breast cancer. Of the 1.67 million new breast cancer cases diagnosed in 2012, 33% were patients under age 50. In comparison, if we look at all cancers, 26% of total diagnosed cases are in patients under 50. (Sources: Globocan 2012; NCI)
Why should I support research? Aren’t prevention and awareness campaigns more important to patients?
Prevention and awareness among both women and men are critical to reducing the number of cancer cases and ensuring that cancer is detected early, for the best chance of a cure. However, research is essential to reach the ultimate goal of curing all types of breast cancers. Research is the only way to understand the disease, how and why it progresses, and what can ultimately stop it. BIG’s vision is “to find a cure for breast cancer through global research and collaboration.” Read more about the importance of clinical trials here.
BIG stands for the Breast International Group, an international non-profit organisation devoted entirely to breast cancer research. BIG was founded in 1999 by Drs Martine Piccart and Aron Goldhirsch, who shared the idea of avoiding unnecessary duplication of effort and waste of time and resources. BIG was therefore created with the objective of facilitating research and collaboration among the scientific community outside the United States. Today BIG consists of a large network of academic research groups across 50 countries and 5 continents. BIG connects thousands of hospitals and scientists, who collaborate on pioneering breast cancer research. BIG also collaborates closely with the US National Cancer Institute and its network of research groups.
Knowledge is power…and shared knowledge is even more powerful.
BIG is led by an Executive Board of world-class breast cancer specialists, chaired by Dr Martine Piccart, and supported by from BIG Headquarters in Brussels, Belgium. The Executive Board proposes the strategic direction of BIG’s research based on its expert knowledge, and this is discussed and endorsed by the General Assembly of member groups. In 2013 BIG decided to prioritise metastatic breast cancer, as this most lethal form of breast cancer has seen little progress in previous decades.
Breast cancer has been classified into multiple sub-types, each requiring different approaches to treatment. In order to test new treatments on enough patients within a sub-group, and to be confident about the results, most research cannot be limited to one institution or even to one country. Large-scale international cooperation is crucial to make significant advances in treating breast cancer, reduce the wasteful duplication of efforts, and best serve those affected by the disease.
Several of BIG’s clinical trials are considered to be landmark and have had a real impact on treatment decision-making.
• The HERA trial, which recruited 5.100 women from 480 hospitals across 39 countries in just over 4 years, helped accelerate the approval of trastuzumab (Herceptin®), a drug that has cut relapse rates by 40% in women with early stage HER2-positive disease. Trastuzumab is now the standard treatment for this aggressive type of breast cancer.
• Three major BIG trials focused on hormonal therapy showed that many patients with oestrogen receptor-positive breast cancer respond better to aromatase inhibitors than to the drug tamoxifen and can provide a safe alternative for those who suffer side effects from the drug. These studies, together involving nearly 18.000 patients, represent an important step forward towards personalised treatments for women with ER-positive disease.
• BIG is the only truly international body focused exclusively on developing, conducting and coordinating patient-centred breast cancer research;
• BIG focuses on a cure and is distinguishable from many charities by the fact that it conducts its own research and does not simply redistribute funding to other third parties;
• BIG follows strict principles of research conduct that aim to eliminate bias from the research process, both when working with the pharmaceutical industry or when working alone;
• BIG has the ability to achieve faster results and greater patient benefits by:
- Engaging its network to rapidly enrol large numbers of patients into complex international clinical trials;
- Sharing best practices, expertise and data in pursuit of answers to important scientific questions.
BIG receives funding from several sources:
• Private donations;
• Grants from private foundations, charities, and the European Commission;
• Contributions from BIG members;
• Fees from pharmaceutical/biotechnology industry partners for clearly defined management services that the BIG Headquarters and/or BIG members provide in connection with clinical trials.
All of BIG’s research activities, whether undertaken with commercial or academic partners, adhere to BIG’s Principles of Research Conduct. These principles are designed to ensure that while trials will meet industry requirements from a regulatory standpoint, BIG and its members remain responsible for determining the research agenda, for controlling the clinical study data, and for presenting and publishing research findings (positive and negative) according to academic standards. In this way, BIG preserves its scientific integrity while developing and conducting collaborative research with a variety of partners.
Depending on the interests and wishes of the donor, funds donated to BIG are used to support one of three different objectives:
• Projects: Current and planned research projects require funds to cover a wide range of costs: operational set-up, recruiting patients, administering patient treatments, collecting and banking tumour samples for future research, conducting research on the collected samples, data collection and storage, analysis of results, and sharing of data.
• Education: Funds raised support conferences and fellowships, with the objective of enabling early-career scientists or clinicians to gain hands-on experience with the world’s leading breast cancer experts and to contribute directly to groundbreaking scientific discoveries. These funds also support workshops and activities aimed at building the capacity of research groups working in developing or emerging regions.
• Operations: BIG’s Headquarters operates with a small staff of about 35 people, who support the entire BIG network. BIG Headquarters’ activities include the core functions of any organisation, such as finance and human resource management, information technology and communications, but also provision of medical, scientific and project management expertise needed to develop and run the highest quality clinical trials and research programmes.
Upon receiving a donation, BIG prepares and communicates an interim report to the donor every six months. Six months after the last instalment of the donation, BIG undertakes to provide a final report detailing the results of the project during the period of the grant. Throughout the relationship, the donor can also expect to receive regular newsletters and other communications from BIG, detailing the activities ongoing throughout the organisation.
Depending on a donor’s home country, the local benefits may be direct or indirect. If a donor’s home country is part of BIG’s international network, and if research groups and their affiliated hospitals participate directly in BIG clinical trials, they and their patients can benefit directly from the new treatments being studied and the latest advances in research. Ultimately, the world at large benefits from BIG’s research when new knowledge about breast cancer is generated, study results are published, and new treatments studied by BIG contribute to improving the standard of care for breast cancer patients.
There are several ways in which you can help BIG:
1. Make a donation: choose to support a project, an educational initiative, or BIG’s operational costs.
2. Organise an event: you can support BIG against breast cancer by volunteering to host a meeting or dinner with your friends and a scientist, or other type of party to raise awareness and funds for BIG.
3. Introduce BIG to your personal / professional network: one of the goals of BIG against breast cancer is to build a network of supporters globally, in all the countries where BIG is present. Please know that we will keep all information strictly confidential and will not approach any individual without your prior approval.
4. Donate your time and professional skills: BIG can always use support in areas such as marketing, public relations and advocacy. If you bring these or other skills to the table that you would like to provide to BIG on a volunteer basis, your time is welcome and appreciated!
Donations of € 40 or more are tax deductible in Belgium. BIG will issue your tax receipt. BIG maintains a "Friends of BIG" fund in the United States via the King Baudouin Foundation US, which also permits tax-deductible donations. BIG also benefits from a relationship with Transnational Giving Europe (TGE), which enables tax-deductible donations from many countries all over the world. Please contact us to find out if your home country is a member of this organisation.
Today, the majority of clinical trials are funded and run by the pharmaceutical industry to test the effectiveness of new drugs they have developed. However, academic researchers also initiate and run clinical trials, often to find answers to questions that have no inherent commercial interest: how can drugs best be combined or sequenced with others to optimize patient treatment? Can expensive treatments be given for shorter durations without having an impact on patient outcome? Are there better ways to use “old” or “generic” drugs?
BIG facilitates academic research but also works closely with the pharmaceutical industry in a way that is “win-win” for all. Specifically, all BIG trials respect specific principles of research conduct that ensure that data collected are handled and analyzed independently, generating highly credible results. In addition, patients are followed long after treatment ends, to ensure the detection of any long-term side effects. BIG studies are also governed by committees and policies designed to reduce bias and protect the patient. Finally, the processes surrounding access by scientists to precious tumour and other tissues donated by patients for future research are subject to strict rules to ensure that only the best research ideas are supported.
Running studies in this way holds tremendous potential for patients and promises long-term gains to society, in all regions of the world.
Yesterday’s research results in the treatments of today and the ideas for tomorrow.