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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"
 
The Brod Group started in 2019 a large multinational research on achondroplasia, interviewing hundreds of parents of children with achondroplasia by phone and conducting focus groups, in several countries. Beyond Achondroplasia has been supporting this research since then. By now, two papers have been published and posters have been presented at conferences (read below)

As part of this large research project, The Brod Group, developed a 2 stages study, an online/web-based research survey.

 

Online survey description

  • A web-based survey about the parent and the child’s experiences related to the child’s achondroplasia.
  • The survey took about 45 minutes to complete. This survey allowed breaks and saving the responses for 1 week.
  • Parents did a follow-up online survey 2 weeks later, which took 5-10 minutes.
 
paper 1
Image 1. Paper "Assessing physical symptoms, daily functioning, and well-being in children with achondroplasia"
Pfeiffer K et al, 2020




Paper 2

Image 2. Paper "Assessing the impacts of having a child with achondroplasia on parent well-being" Pfeiffer K et al, 2020


Poster 1
Image 3. Graph from the poster "Development of a Measure for the Impacts of Pediatric
Achondroplasia on Children’s Daily Functioning and Well-being" Pfeiffer K et al, 2020 

 


Thank you to all parents that participated in this study!


Notes:
  • This study was open between March and May 2022

 
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Thank You.