Paz, Manuel Posada de la

Rare Diseases Epidemiology

Paz, Manuel Posada de la - Rare Diseases Epidemiology, ebook


Ebook, PDF with Adobe DRM
ISBN: 9789048194858
DRM Restrictions

PrintingNot allowed
Copy to clipboardNot allowed

Table of contents

1. Rare Diseases – Avoiding Misperceptions and Establishing Realities: The Need for Reliable Epidemiological Data
Stephen C. Groft, Manuel Posada Paz

2. Rare Diseases Epidemiology Research
Manuel Posada Paz, Ana Villaverde-Hueso, Verónica Alonso, Sándor János, Óscar Zurriaga, Marina Pollán, Ignacio Abaitua-Borda

3. Evidence-Based Medicine and Rare Diseases
Simon Day

4. Prevention, Diagnosis and Services
Eva Bermejo, María Luisa Martínez-Frías

5. The Importance of Case Reports in Advancing Scientific Knowledge of Rare Diseases
John C. Carey

6. Patient Registries: Utility, Validity and Inference
Rachel Richesson, Kendra Vehik

7. Biobanking in Rare Disorders
Hanns Lochmüller, Peter Schneiderat

8. Evaluation of the Validity and Utility of Genetic Testing for Rare Diseases
Scott D. Grosse, Lisa Kalman, Muin J. Khoury

9. Population-Based Surveillance for Rare Congenital and Inherited Disorders: Models and Challenges
Jodi M. Jackson, Krista S. Crider, Richard S. Olney

10. Statistical Methods for the Geographical Analysis of Rare Diseases
Virgilio Gómez-Rubio, Antonio López-Quílez

11. Clinical Trials and Rare Diseases
Joachim Werner Otto Gerß, Wolfgang Köpcke

12. A Regulatory Overview About Rare Diseases
Jordi Llinares

13. Economic Considerations in the Provision of Treatments for Rare Diseases
Christopher McCabe, Richard Edlin, Jeff Round

14. Rare Diseases Social Epidemiology: Analysis of Inequalities
Anna Kole, François Faurisson

15. Quality of Life and Rare Diseases
Luis Rajmil, Lilisbeth Perestelo-Pérez, Michael Herdman

16. Cost of Illness and Economic Evaluation in Rare Diseases
Julio López-Bastida, Juan Oliva-Moreno

17. The Burden of Rare Cancers in Europe
Gemma Gatta, Riccardo Capocaccia, Annalisa Trama, Carmen Martínez-García

18. Hereditary Channelopathies in Neurology
Karin Jurkat-Rott, Holger Lerche, Yvonne Weber, Frank Lehmann-Horn

19. Osteochondral Diseases and Fibrodysplasia Ossificans Progressiva
Antonio Morales-Piga, Frederick S. Kaplan

20. The Prevalence of Congenital Anomalies in Europe
Helen Dolk, Maria Loane, Ester Garne

21. Rare Autoimmune Diseases
Arrigo Schieppati, Erica Daina

22. Epidemiology of Rare Anaemias in Europe
Beatrice Gulbis*, Androulla Eleftheriou*, Michael Angastiniotis, Sarah Ball, Jordi Surrallés, María Castella, Hermann Heimpel*, Anita Hill, Joan-Lluis Vives Corrons*

23. Inherited Metabolic Rare Disease
Teresa Pampols

24. The Contribution of Rare Diseases to Understanding the Epidemiology of Neurodevelopmental Disabilities
Diana Schendel, Catherine Rice, Christopher Cunniff

25. Creating a European Union Framework for Actions in the Field of Rare Diseases
Antoni Montserrat Moliner

26. National Plans and Strategies on Rare Diseases in Europe
Domenica Taruscio, Luciano Vittozzi, Rumen Stefanov

27. Ethical Aspects on Rare Diseases
Luis A. Barrera, Gilberto Cely Galindo

28. Advocacy Groups and Their Role in Rare Diseases Research
Mary Dunkle, Wayne Pines, Peter L. Saltonstall

Keywords: Medicine & Public Health, Epidemiology, Human Genetics, Health Promotion and Disease Prevention

Publication year
Advances in Experimental Medicine and Biology
Page amount
22 pages
Medicine, Health Care, Mode

Similar titles