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  • Book
    Manuel 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.
    Digital Access Springer 2010
    Access via Advances in experimental medicine and biology ; 2010; 686
    Location
    Version
    Call Number
    Items
    Advances in experimental medicine and biology ; 2010; 686
    c2010
  • Article
    Blinkhorn AS, Verity JM.
    Community Dent Oral Epidemiol. 1979 Aug;7(4):195-8.
    General dental practitioners have an important role in the dissemination of information to their patients and their advice is often reinforced with written health education material. Unfortunately, this written information is often of limited value for particular groups of patients because of its level of readability. This investigation of the problem was in two parts; firstly, a group of 140 secondary schoolchildren were asked to explain the meaning of a selection of words in common use in dental health education, and secondly, the readability of some current dental health education literature was assessed using the Fog Index. The results indicate that current dental health education literature reflects the reading ability of the designers rather than the ability of the potential target group. Many of the words in the dental profession's preventive vocabulary were not understood by the children. Over 80% were unsure of the meaning of fluoride tablets, gum disease, gingivitis and oral hygiene. The results of this investigation indicate that dentists should ensure that dental health education literature is not unduly complex and should take more time explaining the dental vocabulary in lay terminology.
    Digital Access Access Options