CIBERER : Spanish national network for research on rare diseases: A highly productive collaborative initiative

Altres ajuts: Instituto de Salud Carlos III (ISCIII); Ministerio de Ciencia e Innovación.CIBER (Center for Biomedical Network Research; Centro de Investigación Biomédica En Red) is a public national consortium created in 2006 under the umbrella of the Spanish National Institute of Health Carlos III (ISCIII). This innovative research structure comprises 11 different specific areas dedicated to the main public health priorities in the National Health System. CIBERER, the thematic area of CIBER focused on rare diseases (RDs) currently consists of 75 research groups belonging to universities, research centers, and hospitals of the entire country. CIBERER's mission is to be a center prioritizing and favoring collaboration and cooperation between biomedical and clinical research groups, with special emphasis on the aspects of genetic, molecular, biochemical, and cellular research of RDs. This research is the basis for providing new tools for the diagnosis and therapy of low-prevalence diseases, in line with the International Rare Diseases Research Consortium (IRDiRC) objectives, thus favoring translational research between the scientific environment of the laboratory and the clinical setting of health centers. In this article, we intend to review CIBERER's 15-year journey and summarize the main results obtained in terms of internationalization, scientific production, contributions toward the discovery of new therapies and novel genes associated to diseases, cooperation with patients' associations and many other topics related to RD research

Barriers to cervical cancer screening in Mulanje, Malawi: a qualitative study

Victoria K Fort1, Mary Sue Makin2, Aaron J Siegler1, Kevin Ault3, Roger Rochat11Rollins School of Public Health, Atlanta, Georgia, USA; 2Mulanje Mission Hospital, Mulanje, Malawi; 3Emory University Medical School, Atlanta, Georgia, USABackground: In Malawi, cervical cancer is the most prevalent form of cancer among women, with an 80% mortality rate. The Mulanje Mission Hospital has offered free cervical cancer screening for eight years; however, patients primarily seek medical help for gynecologic complaints after the disease is inoperable.Methods: We investigated how women in rural Malawi make health-seeking decisions regarding cervical cancer screening using qualitative research methods. The study was conducted between May and August of 2009 in Mulanje, Malawi.Results: This study found that the primary cue to action for cervical cancer screening was symptoms of cervical cancer. Major barriers to seeking preventative screening included low knowledge levels, low perceived susceptibility and low perceived benefits from the service. Study participants did not view cervical cancer screening as critical health care. Interviews suggested that use of the service could increase if women are recruited while visiting the hospital for a different service.Conclusion: This study recommends that health care providers and health educators target aspects of perceived susceptibility among their patients, including knowledge levels and personal risk assessment. We believe that continued support and advertisement of cervical cancer screening programs along with innovative recruitment strategies will increase usage density and decrease unnecessary deaths from cervical cancer in Malawi.Keywords: cervical cancer, interviews, health care, Mulanje Mission Hospita