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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 new joint research project #MovementPatterns, conducted by Carinthia University of Applied Sciences (Austria), University of Évora (Portugal), Comprehensive Health Research Center, Universität Graz (Austria), and the The Institute for Applied Research on Ageing (IARA), aims to understand individual mobility and movement patterns in adults with a rare bone condition. The results can significantly contribute to rehabilitation, home care and to support the prescription of physical activity.

 

If you are over 18 and have rare bone condition,

 

TAKE PART UNTIL 25 September!

 

The overall goal of this join research project is to understand individual mobility and movements patterns among adults with a rare bone condition. The results may significantly contribute to rehabilitation in-home care for example and to support physical activity prescription.

 

If you accept to participate, you will be asked to fill in a questionnaire (online or in an interview, which one you prefer) and to walk for 15 minutes carrying your mobile phone and using a specific app for movement analysis and record your movement data while walking.

 

estudo padroes top

 

Questionnaire

 

A specific questionnaire was developed for this study. It aims to collect essential data related to physical activity and exercise habits and how to assess your daily mobility. It takes about 10 minutes to answer.

 

It is available in three languages and you can find it here:

 

 

 

15 Minutes Walk

 

After completing the questionnaire, to continue your participation in the study, you will be asked to:

 

A. Download the Phyphox® app on your mobile phone (free);

B. Read the instructions (below) on how to use the app;

C. WALK for 15 MINUTES with your mobile phone turned on, with the app running, on a straight course, ideally without sharp turns. The mobile phone should be placed at the level of your LEFT HIP (inside your trouser pocket or in a shoulder bag or purse). See examples below (photos);

D. Send the data from the app by e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it. . Please, read the guideline below in "Phyphox instructions" how to set up the app and send the data.

 

mobile placing

 

 

Phyphox® instructions

 

phyphox dark

 

Phyphox® is a free, motion analysis app. It is available for Android and iOS and has a high level of data security.

 

Download the app here:

 

 

Download the PDF instructions here:

 

 

 

Other informations

 

The researchers:

Carinthia University - Austria
Sascha Fink
Email: This email address is being protected from spambots. You need JavaScript enabled to view it. Mobile: +43 (0)5 / 90500-3268

Évora University – Portugal
Inês Alves
Email: This email address is being protected from spambots. You need JavaScript enabled to view it. Mobile: +351 910 442 840

 

If you have any further questions regarding this project, please do not hesitate to contact Sascha Fink or Inês Alves. Questions concerning your rights as a patient and participant in this questionnaire will also be answered. As soon as the general results of this questionnaire are available, you can also be informed about them if you wish, reaching out to the researchers.

 

Your participation is essential to this research. It is voluntary and at no cost to you. You will not receive any financial compensation for your participation.

The results of the study will be published later in an article that will be shared here and individually with all participants.

 

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Thank You.