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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"
LIAISE is the Lifetime Impact of Achondroplasia Study in Europe
The LIAISE study is gathering information through a questionnaire and patient's historical clinical data about :
  • Types of clinical and medical interventions, such as the number of doctor visits
  • Individuals’ and caregivers’ quality of life
  • Impact on education, employment, and social life
Participation in the study does not require anyone needing to travel as all paperwork and questionnaires and consenting to the review of at least five years of historical clinical data can all be completed at home.
  • ·Open to 300 participants ages 5 to 70 years
  • ·Caregivers may complete the questionnaire if the individual living with achondroplasia is under 18 years of age
  • ·Sites are open in Germany, Italy, Spain, and Sweden
  • ·Participants don’t need to be known to the physician or hospital in order to participate.

Type of study
Study Type  : Observational
Estimated Enrollment  : 300 participants
Observational Model: Cohort
Time Perspective: Retrospective
Official Title: The Impact of Achondroplasia on Quality of Life, Healthcare Resource Use, Clinical, Socio-economic and Psychosocial State of the Individual.
Actual Study Start Date  : December 17, 2017
Estimated Primary Completion Date  : June 30, 2019
Estimated Study Completion Date  : June 30, 2019
The full LIASE study is sponsored by BioMarin Pharmaceutical and is fully published at the website. The contact details of the investigators who can be contacted regarding participation are listed at the bottom page.
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