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The research funder’s admission has been largely welcomed, but experts say many institutions need to do much more to implement anti-racism pledges. The research funder’s admission has been largely welcomed, but experts say many institutions need to do much more to implement anti-racism pledges.

Letter to the Editor

Background Case registers have been used extensively in mental health research. Recent developments in electronic medical records, and in computer software to search and analyse these in anonymised format, have the potential to revolutionise this research tool. Methods We describe the development of the South London and Maudsley NHS Foundation Trust (SLAM) Biomedical Research Centre (BRC) Case Register Interactive Search tool (CRIS) which allows research-accessible datasets to be derived from SLAM, the largest provider of secondary mental healthcare in Europe. All clinical data, including free text, are available for analysis in the form of anonymised datasets. Development involved both the building of the system and setting in place the necessary security (with both functional and procedural elements). Results Descriptive data are presented for the Register database as of October 2008. The database at that point included 122,440 cases, 35,396 of whom were receiving active case management under the Care Programme Approach. In terms of gender and ethnicity, the database was reasonably representative of the source population. The most common assigned primary diagnoses were within the ICD mood disorders (n = 12,756) category followed by schizophrenia and related disorders (8158), substance misuse (7749), neuroses (7105) and organic disorders (6414). Conclusion The SLAM BRC Case Register represents a 'new generation' of this research design, built on a long-running system of fully electronic clinical records and allowing in-depth secondary analysis of both numerical, string and free text data, whilst preserving anonymity through technical and procedural safeguards.

Patients with rare diseases, and the scientists who study those diseases, were long inhibited by geographic sparsity. But the social-media age has made it much easier for them to band together to leverage their experience and push forward change.

Innovative community efforts in academia and non-profits to engage student researchers, encourage open sharing of DNA constructs and new methodology as well as build a Registry of Standardized Biological Parts have been central to the emergence of synthetic biology.

The Bill & Melinda Gates Foundation is a major contributor to global health; its influence on international health policy and the design of global health programmes and initiatives is profound. Although the foundation's contribution to global health generally receives acclaim, fairly little is known about its grant-making programme. We undertook an analysis of 1094 global health grants awarded between January, 1998, and December, 2007. We found that the total value of these grants was US$8·95 billion, of which $5·82 billion (65%) was shared by only 20 organisations. Nevertheless, a wide range of global health organisations, such as WHO, the GAVI Alliance, the World Bank, the Global Fund to Fight AIDS, Tuberculosis and Malaria, prominent universities, and non-governmental organisations received grants. $3·62 billion (40% of all funding) was given to supranational organisations. Of the remaining amount, 82% went to recipients based in the USA. Just over a third ($3·27 billion) of funding was allocated to research and development (mainly for vaccines and microbicides), or to basic science research. The findings of this report raise several questions about the foundation's global health grant-making programme, which needs further research and assessment.

Key Points Research has a pivotal role in cancer control planning as it will lead to the development of evidence-based strategies for cancer prevention and control relevant to Africa Cancer research programmes should be multi-disciplinary and contain a research–career component for the development of African scientists as research leaders and mentors, which will lead to sustainable research programmes International funding agencies and pharmaceutical companies should support the creation of long-term funding to foster rigorous and innovative investigator-initiated research The formation of North–South and South–South partnerships and networks is essential for the creation of the infrastructure and environment needed to promote research African scientists should engage country communities and policy-makers to promote community and country ownership of research programmes Cancer research should be accompanied by the highest levels of ethical, legal and socially appropriate standards to ensure the protection of patients In September 2012, over 100 experts in cancer research in Africa met in London to discuss the challenges in carrying out high-quality research in this continent. This Review summarizes the discussions and recommendations of this meeting and many examples of successful programmes that have enhanced the development of research in Africa. It also discusses the next steps required to create programmes that will enable evidenced-based cancer control approaches. Cancer research in Africa will have a pivotal role in cancer control planning in this continent. However, environments (such as those in academic or clinical settings) with limited research infrastructure (laboratories, biorespositories, databases) coupled with inadequate funding and other resources have hampered African scientists from carrying out rigorous research. In September 2012, over 100 scientists with expertise in cancer research in Africa met in London to discuss the challenges in performing high-quality research, and to formulate the next steps for building sustainable, comprehensive and multi-disciplinary programmes relevant to Africa. This was the first meeting among five major organizations: the African Organisation for Research and Training in Africa (AORTIC), the Africa Oxford Cancer Foundation (AfrOx), and the National Cancer Institutes (NCI) of Brazil, France and the USA. This article summarizes the discussions and recommendations of this meeting, including the next steps required to create sustainable and impactful research programmes that will enable evidenced-based cancer control approaches and planning at the local, regional and national levels.

The Gates Foundation is the most influential private philanthropic foundation in global health and development. This article examines how the Foundation has developed an unparalleled capacity to rally other donors to its priorities, which include the development and distribution of technological tools to reduce the burden of infectious disease and child mortality in the world’s most impoverished regions. Using publicly available data, the article analyses the Gates Foundation’s strategic engagement in Europe, focusing on its bureaucratic presence, government relations, and grant-making in its three European focus countries: the United Kingdom (UK), Germany and France. It highlights that, since 2010, the Gates Foundation has built a bureaucratic infrastructure akin to a diplomatic service, establishing country offices in London and Berlin alongside representation in Paris, Brussels and Stockholm. Through regular engagement with elected officials and bureaucrats in these nations, the Foundation has forged many strategic partnerships, effectively leveraging European states’ diplomatic power in wider political forums and alliances. Moreover, the Foundation has disbursed billions in grants to recipients in the UK, Germany, and France to advance research and innovation on its priority health issues, implement programs in poor countries, and develop policy and advocacy related to global health and development. Combined, these efforts have contributed to securing substantial and recurrent government co-investment in Gates-supported initiatives. The article proposes that the Foundation exercises a form of ‘network diplomacy’ that entails building and maintaining wide networks across European societies with the aim of aligning donor governments’ overseas development assistance and policies with the Foundation’s strategic objectives in global health and development. The concept of network diplomacy offers a new perspective on how the Gates Foundation has consolidated and expanded its transnational political presence through an approach that is strategic, bureaucratised and institutionalised, rather than simply a product of its financial might. The findings amplify existing concerns regarding the sway of private foundations over public policy, their impact on democratic accountability and governance in donor states, and the resultant implications for the Foundation’s intended beneficiaries in low- and middle-income countries.

For 50 years, the Thomas Wickham-Jones (TWJ) Foundation has promoted the advancement of otology and audiology in the UK and Republic of Ireland through a series of overseas Fellowships and other grants. The paper examines the history of the Foundation since its establishment in 1974, drawing upon the Foundation's archives and personal recollections. The analysis is located within a framework concerning the factors that shape the success or failure of a foundation including vision, strategy, information, leadership and finance. The activities of the TWJ Foundation are charted over five decades, and the governance of the Foundation is detailed. Particular attention is given to the Major Fellowships offered, at first in North America, and to their subsequent development into the Foundation's current rotation. The paper offers an assessment of the TWJ Foundation's impact on the training of otologists in the British Isles and concludes with a brief self-reflective analysis.

Primary immunodeficiencies (PI) are genetic defects of the immune system that result in chronic and often life-threatening infections and/or life-threatening autoimmunity if not diagnosed and treated. Patients with a suspected PI, but without a genetic diagnosis, commonly undergo a diagnostic odyssey that is costly, time-consuming, and arduous. This delay in diagnosis prevents appropriate disease management and treatment, contributing to prolonged suffering and decreased quality of life. Although next generation sequencing (NGS) can provide these patients with relief from such a diagnostic odyssey, it is often unavailable, mainly due to cost and inaccessibility. In January 2019, the Jeffrey Modell Foundation (JMF) launched a free genetic sequencing pilot program for Jeffrey Modell Centers Network (JMCN) patients clinically diagnosed with an underlying PI. A total of 21 sites within the JMCN were invited to participate. JMF collaborated with Invitae, and testing was comprised of Invitae’s Primary Immunodeficiency Panel, which currently includes 207 genes. A questionnaire was disseminated to each participating physician to evaluate barriers to access to genetic sequencing and changes in disease management and treatment after testing. One hundred fifty-eight patients and 29 family members were tested in this pilot study. Twenty-one percent of patients with a suspected monogenic disorder received a molecular diagnosis, and others received potentially useful diagnostic leads. Based on the results of genetic sequencing, clinical diagnosis was altered in 45% of patients, disease management was altered in 40%, treatment was altered in 36%, and genetic counseling was altered in 62%. The results of this pilot program demonstrate the utility, cost-efficiency, and critical importance of NGS for PI and make the case for broad scale sequence–based diagnostics for PI patients when requested by expert immunologists.