New Journal Supplement Explores Methods for Studying Rare Diseases
An AHRQ-sponsored journal supplement that explores innovative research methods for studying health outcomes in rare diseases is now available online from AHRQ and the Journal of General Internal Medicine (JGIM). The supplement includes more than 15 articles on important research being done in the United States and abroad to improve methods for studying health outcomes in people with rare and complex diseases, a patient community increasingly recognized in primary care and in health policy discourse. Topics include integration of stakeholder involvement in assessing health outcomes; economic, regulatory, ethical, legal and social issues related to the study of rare disease health outcomes; emerging data sources and novel analytic methods for observational research; and the study of patients’ health outcomes in clinical trials. Articles are intended for researchers, clinicians, health policymakers and other stakeholders. The supplement was developed through AHRQ’s new Center for Evidence and Practice Improvement. Articles can be downloaded for free from AHRQ and JGIM.