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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"

Inês Alves, ANDO Portugal founder, is leading a doctoral research program by Évora University on "Physical, Biomechanical, Nutritional and Psychological Characterization of adults with Achondroplasia, associated to physical activity, exercise and sports". This is an academic study supported by ANDO Portugal - National Organization for Skeletal Sysplasia.

Currently, the physical evaluations are taking place in Robocorp Biomechanics Lab in Coimbra (Portugal) and if you considering traveling to Portugal in the next months, send an email to This email address is being protected from spambots. You need JavaScript enabled to view it.

We are considering the possibility to take this research study to Italy and to the USA in 2023. If you are interested, please get in touch through the same email address.


Objective:

The main objective of this research project is the physical, biomechanical and psychological characterization in association with physical activity, exercise and adapted sports of people with achondroplasia. To this end, the study intends to evaluate as many adults as possible, between the ages of 18 and 80.


What are the benefits for the participants:

This study, besides bringing benefits to the scientific and medical communities — through the data collection and research carried out — also promotes a set of direct benefits for the participants:

  • Participants can understand their body condition and overall physical capacity
  • Know their cardiac and respiratory capacity
  • Know their strength, energy, and balance
  • Know their joint condition
  • Identify their nutritional needs
  • Improve quality of life
You will receive a report with all this data.


Who conducts the study:

The Leading Investigator of this study is Inês Alves, PhD student in Human Motricity at the University of Évora (UÉ) and President of ANDO Portugal.


What this study includes:

1. Online questionnaires about health (4 of 10 min each)

2. Physical, biomechanical and strength evaluations
This component of the study involves body measurements, physical examinations, and placement of light, painless sensors at some points on the body while performing movement.

3. Individual interviews
One interview with a psychologist to assess your experiences related to physical activity and another interview with a nutritionist, aiming to understand eating habits, nutrient analysis and nutritional orientation.
 

Privacy and other information:

Confidentiality and data privacy are ensured by the anonymity of responses and no electronic authentication is requested. All information collected is intended for academic and scientific purposes only. Participation in this study is free, as is discontinuation at any time.

Should you decide to participate, you will also be asked to carefully read and sign an informed consent. The risks associated with the study are practically nil, limited to those derived from walking or running for a short time. There may be some physical fatigue and tiredness due to the measurements and/or a slight discomfort due to the placement of the sensors.

If you have any questions about the study, you can contact the researcher at any time:This email address is being protected from spambots. You need JavaScript enabled to view it.


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