title: [Need for primary care training in rare diseases].
abstract: OBJECTIVE
  The problem of the need for primary care (PC) training in rare diseases (RD) is approached through a qualitative research study that tries to define its relevance and to identify the need for RD training in PC.
  
  
  METHODS
  By means of naturalistic research methods (in-depth interviews and group dynamics), we tried to discover the personal and professional connotations of PC training in RD in the rural and urban areas of the Community of Madrid, Spain. The areas explored by means of structured interview were: challenges and RD definition; professional experience with RD; relevance of PC for RD; training and information in RD; needs and demands for RD in PC.
  
  
  RESULTS
  We found no differences between the rural and urban groups nor between different professional categories. The RD concept was relatively unknown and difficulties arose in understanding the magnitude and overall importance of these diseases. Nor did the RD concept express the severity or the repercussions of these diseases. RDs awoke little professional interest, in contrast with the human interest aroused.
  
  
  CONCLUSIONS
  The professionals interviewed thought that undergraduate training was sufficient, and rejected postgraduate training as unnecessary and unfeasible. The search for active information through Internet was the best way to obtain data to optimize criteria for patient referral. As such, the Information System for Rare Diseases in Spanish (Sistema de Información de Enfermedades Raras en Español, SIERE) (http://iier.isciii.es/er) meets the demands for information.
authors.affiliation: Instituto de Investigación de Enfermedades Raras, Instituto de Salud Carlos III, Madrid, Spain. alfavel@isciii.es
authors.forename: Alfredo
authors.initials: A
authors.lastname: Avellaneda Fernández
authors.forename: Maravillas
authors.initials: M
authors.lastname: Izquierdo Martínez
authors.forename: Santiago
authors.initials: S
authors.lastname: Luengo Gómez
authors.forename: Javier
authors.initials: J
authors.lastname: Arenas Martín
authors.forename: José R
authors.initials: JR
authors.lastname: Ramón
mesh_terms: D004501:Education, Medical; D006801:Humans; D010821:Physicians, Family / Q000193:education; D011320:Primary Health Care; D035583:Rare Diseases; D013030:Spain