The overall goal of the Clinical Research Program is the improvement of survival of patients with cancer in developing countries. To improve survival, it is essential to help build capacity for the conduct of clinical research in these countries. By building capacity in clinical research, the quality of information will be improved and meaningful contributions to the evidence base for cancer control in low and middle income countries (LMIC). INCTR focuses on cancers of women and children, curable cancers and cancers more common in LMIC.
The types of clinical research projects that INCTR undertakes or has undertaken include information-seeking; situational analyses and treatment studies.
Treatment studies are designed in collaboration with partner institutions in LMIC and must be feasible to conduct in these settings. The purpose of these studies is not to test new drugs, but to optimize treatment and to ensure that treatment is delivered in a standard fashion, according to a protocol. Another major purpose is to collect accurate data about the effects of treatment, including patient outcomes. The overall goals of these types of studies are to ensure greater discipline of the delivery of care, to ensure that greater efforts are made to follow patients in order to accurately measure outcomes, and to make new observations, such as factors that may influence survival. These studies are reviewed scientifically and ethically by external reviewers prior to implementation.
Over 800 patients have been treated by seven centers in Nigeria, Democratic Republic of Congo, Uganda, Kenya and Tanzania. Survival is greater than 60% at 5 years among all institutions, but exceeds 70% at one center. This treatment project has been on-going since 2004. The initial results of the first 356 patients were published in the British Journal of Haematology in 2012. Results achieved by individual centers have been presented at national meetings or international meetings. For patient stories related to this study, please visit: https://www.globalgiving.org/projects/cure-250-children-with-burkitt-lymphoma-in-africa/reports.
This treatment program is currently on-going in Nigeria, Uganda and Tanzania and in the latter two countries in the context of “Developing a Model of Care for Burkitt Lymphoma in Equatorial Africa” which has been partially supported by OPEC’s International Fund for Development (OFID), the UK Challenge Fund and other donors.
Parents of children with retinoblastoma were interviewed by collaborating institutions in Brazil, Bolivia, Mexico, Guatemala, Nigeria, Tanzania, Zimbabwe, Turkey, Pakistan and India. A total of 435 parents were interviewed. In the majority of cases, mothers were usually the first to notice a problem with their child’s eye. And, children whose fathers were illiterate or who had primary school education had more advanced disease at presentation – as did those with lower socioeconomic status. The multi-national collaboration came to an end in 2008, but INCTR Brazil and the Department of Pediatrics of the Santa Marcelina Hospital in Sao Paulo, Brazil continue to interview parents of children who are newly diagnosed with retinoblastoma. Over 100 more questionnaires have been collected in Brazil.
Many public and professional campaigns were developed during the course of this study and many of these same campaigns continue – at either national or regional levels within the countries. For example, INCTR Brazil developed a video that has been translated into multiple languages about the early signs of retinoblastoma. INCTR Brazil, along with its partner, TUCCA were successful in having the government declare a National Retinoblastoma Awareness Day in Brazil. This has been ongoing since 2012. Many events are held in the country to emphasize the blindness that can result if retinoblastoma is not detected and treated early on this day.
For more information about these projects, contact firstname.lastname@example.org.