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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"

This is a study being led by Dr. Julie Hoover-Fong at the Greenberg Center for Skeletal Dysplasias at the Johns Hopkins University, with the main purpose of creating an electronic registry for all types of bone conditions.

First, this registry will focus on people with achondroplasia in the U.S., with the goal of understanding the natural history and treatment outcomes of these patients [1]. Data collected will include outcomes on cardiovascular disease, sleep apnea, pain and compromised mobility [2].

Researchers aim to enroll and collect data of, at least, 1500 people with achondroplasia being treated in any of the study sites for long enough. This will allow them to collect enough retrospective data to be relevant for this study. No one with achondroplasia followed by a doctor at any of the sites mentioned below is being excluded from this study, regardless of age.


This study is taking place at:
- Johns Hopkins University;
- Alfred I. duPont Hospital for Children;
- University of Wisconsin, Madison;
- University of Texas.

It's scheduled to end by April 2020.


Sources:

 

  1. Hoover-Fong, J. Achondroplasia Natural History Multicenter Clinical Study. ClinicalTrials.gov 2017  [cited 2017 13/12]
  2. Fundación ALPE Achondroplasia. Highlights of the ISDS 2017 meetingNews 2017 [cited 2017 13/12].
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