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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"


1st February 2021

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.

,
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 


 

As part of this large research project, The Brod Group, developed a new study, an online/web-based research survey.
Parents of children with achondroplasia aged 2 to 11 years old, from Australia, New Zealand, Spain, and Portugal are invited to participate. Other countries will follow.


Online survey description

  • A web-based survey about the parent and the child’s experiences related to the child’s achondroplasia.
  • The survey will take about 45 minutes to complete. This survey allows breaks and saving the responses for 1 week.
  • Parents will be invited for a follow-up online survey 2 weeks later, which will take 5-10 minutes.

How to participate?

         1º - Send an email to This email address is being protected from spambots. You need JavaScript enabled to view it. with the subject “ACH study profile validation request”
         2º - You will receive a "Profile questionnaire" to reply to. This is a simple step to confirm that parents/guardians are eligible for this specific study.
         3º - If you are eligible and agree to participate, you will be sent a unique web-based research survey link.

Honorarium

  • Parents from Australia and New Zealand that complete the web-based survey will receive $100 for their time and input. 
  • Parents will also receive an additional $25 for the follow-up survey.
  • A gift card will the correspondent amount will be processed after completion of the web-based survey. It will be processed by Global Perspectives, an international health studies agency.

Privacy

  • Parents that participate are not asked to share their name and each individual research survey answers will only be identified by a study ID number assigned to each participant.

Note

  • This study will be accepting participants until mid-March 2021
  • For this study, The Brod Group is looking for a diversity of participants related to the child age group, between 2 and 11 yo, the child school grade and how the child attended school/classes in the last 2 weeks, as also if the parent/guardian that replies has achondroplasia too.

 
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Thank You.