This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

The success of health economics and its guidance for health policy heavily rests on the availability of reliable empirical evidence on the demographic, economic, and epidemiological environment, on behavioral relationships, and on the impact of policy interventions. For Sub-Saharan Africa, especially the epidemiological situation is unclear, since comprehensive systems of mortality and health statistics are often absent.The economic analysis of health naturally places a special focus on the interrelation between health and economic well-being: the overall disease burden decreases when a country grows richer, and the share of communicable diseases decreases in the process of economic development, whereas the share of non-communicable diseases increases. In those parts of Sub-Saharan Africa that are mainly dominated by traditional subsistence farming, however, it is difficult to examine questions of income and health for simple fundamental reasons. A vital prerequisite for an empirical investigation is the thorough and accurate measurement of income. Yet, both the measurement of the burden of disease and the measurement of income are research tasks that are far from being fulfilled for Sub-Saharan Africa. A further issue that is related with economic well-being and health is education. For poor rural regions predominated by traditional subsistence farming it is far from clear whether investments in human capital are worthwhile.The present study addesses this research gap by producing empirical evidence on the measurement of the burden of disease, the structure of income, and returns to education in rural West Africa. Concretely it deals with the collection and analysis of mortality, morbidity, and socio-economic data in the Nouna Health District in the North-West of Burkina Faso. The study was accepted as a doctoral thesis at the University of Heidelberg. Earlier versions of some of its chapters have been published as working papers or in international journals.