Beyond Achondroplasia

Growing together with Clara

Study on achondroplasia – request for participation in the USA

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The Brod Group, a health outcomes research, and consulting firm are currently conducting an international study of pediatric achondroplasia.

Purpose of the study

To get a better understanding of the experiences and daily life of children and adolescents with achondroplasia, as well as the experiences of parents who have children with achondroplasia.

The study findings

Will be used to helping identify important outcomes to consider in future studies of achondroplasia and the results may also be a useful tool to address misconceptions of achondroplasia.

In this document, ACH Study Advertisement you can find additional study details.

Participants

This will be an international study and researchers are now looking for participants living in the U.S.A.

  • children with achondroplasia with ages between 9 and 11 years old
  • parents with achondroplasia that also have children with achondroplasia under 18 years of age  (one interview per family)

How will the study be conducted?

  • In a 1-hour telephone interview or a 2-hours focus group (location is to be determined but possibly in New York City)
  • All data will be kept confidential, and no individual will be identified in the study results
  • There is a $125 honorarium for participating in a focus group and a $75 honorarium for participating in a telephone interview

If you are interested in participating, adding value to this research with your personal real-life knowledge on achondroplasia, please contact Jane Beck, Senior Research Associate with The Brod Group:

e-mail: jane@thebrodgroup.net

telephone: (415) 317-3987

3 Comments

  1. My daughter 19 years old just gave birth to a baby boy with Achondroplasia.

    • Congratulations! How are the baby and the mother? Now is important for your grandson to have the best possible follow up, in order to facilitate his growth and reduce the possible complications that may occur due to achondroplasia

  2. I have a daughter she’s just 7weeks with achondroplasia I would like to have more info about this study

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