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The Resource Rare diseases epidemiology, Manuel Posada de la Paz, Stephen C. Groft, editors

Rare diseases epidemiology, Manuel Posada de la Paz, Stephen C. Groft, editors

Work
Publication
Extent
xxii, 542 pages
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
Isbn
9789048194841
Instance
Label
Rare diseases epidemiology
Title
Rare diseases epidemiology
Statement of responsibility
Manuel Posada de la Paz, Stephen C. Groft, editors
Contributor
Subject
Language
eng
Member of
Cataloging source
BTCTA
Illustrations
illustrations
Index
index present
Literary form
non fiction
Nature of contents
bibliography
http://library.link/vocab/relatedWorkOrContributorName
  • Posada de la Paz, Manuel
  • Groft, Stephen C
Series statement
Advances in experimental medicine and biology,
Series volume
v. 686
http://library.link/vocab/subjectName
  • Rare diseases
  • Epidemiology
  • Rare Diseases
Label
Rare diseases epidemiology, Manuel Posada de la Paz, Stephen C. Groft, editors
Instantiates
Publication
Bibliography note
Includes bibliographical references and index
Carrier category
volume
Carrier category code
  • nc
Carrier MARC source
rdacarrier
Content category
text
Content type code
  • txt
Content type MARC source
rdacontent
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
Control code
646114957
Dimensions
24 cm
Extent
xxii, 542 pages
Isbn
9789048194841
Isbn Type
(alk. paper)
Lccn
2010933647
Media category
unmediated
Media MARC source
rdamedia
Media type code
  • n
Other physical details
illustrations
System control number
(OCoLC)646114957
Label
Rare diseases epidemiology, Manuel Posada de la Paz, Stephen C. Groft, editors
Publication
Bibliography note
Includes bibliographical references and index
Carrier category
volume
Carrier category code
  • nc
Carrier MARC source
rdacarrier
Content category
text
Content type code
  • txt
Content type MARC source
rdacontent
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
Control code
646114957
Dimensions
24 cm
Extent
xxii, 542 pages
Isbn
9789048194841
Isbn Type
(alk. paper)
Lccn
2010933647
Media category
unmediated
Media MARC source
rdamedia
Media type code
  • n
Other physical details
illustrations
System control number
(OCoLC)646114957

Subject

Member of

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