BookManuel Posada de la Paz, Stephen C. Groft, editors.
Contents:
Rare diseases-avoiding misperceptions and establishing realities : the need for reliable epidemiological data / Stephen C. Groft and Manuel Posada de la Paz
Rare diseases epidemiology research / Manuel Posada de la Paz ... [et al.]
Evidence-based medicine and rare diseases / Simon Day
Prevention, diagnosis, and services / Eva Bermejo and María Luisa Martínez-Frías
The importance of case reports in advancing scientific knowledge of rare diseases / John C. Carey
Patient registries : utility, validity, and inference / Rachel Richesson and Kendra Vehik
Biobanking in rare disorders / Hanns Lochmüller and Peter Schneiderat
Evaluation of the validity and utility of genetic testing for rare diseases / Scott D. Grosse, Lisa Kalman, and Muin J. Khoury
Population-based surveillance for rare congenital and inherited disorders : models and challenges / Jodi M. Jackson, Krista S. Crider, and Richard S. Olney
Statistical methods for the geographical analysis of rare diseases / Virgilio Gómez-Rubio and Antonio López-Quílez
Clinical trials and rare diseases / Joachim Werner Otto Gerss and Wolfgang Köpcke
A regulatory overview about rare diseases / Jordi Llinares
Economic considerations in the provision of treatments for rare diseases / Christopher McCabe, Richard Edlin, and Jeff Round
Rare diseases social epidemiology : analysis of inequalities / Anna Kole and François Faurisson
Quality of life and rare diseases / Luis Rajmil, Lilisbeth Perestelo-Pérez, and Michael Herdman
Cost of illness and economic evaluation in rare diseases / Julio López-Bastida and Juan Oliva-Moreno
The burden of rare cancers in Europe / Gemma Gatta ... [et al.]
Hereditary channelopathies in neurology / Karin Jurkat-Rott ... [et al.]
Osteochondral diseases and fibrodysplasia ossificans progressiva / Antonio Morales-Piga and Frederick S. Kaplan
The prevalence of congenital anomalies in Europe / Helen Dolk, Maria Loane, and Ester Garne
Rare autoimmune diseases / Arrigo Schieppati and Erica Daina
Epidemiology of rare anaemias in Europe / Beatrice Gulbis ... [et al.]
Inherited metabolic rare disease / Teresa Pampols
The contribution of rare diseases to understanding the epidemiology of neurodevelopmental disabilities / Diana Schendel, Catherine Rice, and Christopher Cunniff
Creating a European Union framework for actions in the field of rare diseases / Antoni Montserrat Moliner
National plans and strategies on rare diseases in Europe / Domenica Taruscio, Luciano Vittozzi, and Rumen Stefanov
Ethical aspects on rare diseases / Luis A. Barrera and Gilberto Cely Galindo
Advocacy groups and their role in rare diseases research / Mary Dunkle, Wayne Pines, and Peter L. Saltonstall.
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