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Encuesta sobre la acondroplasia
Hemos diseñado un cuestionario con el objetivo de conocer la población afectada o cercana a la acondroplasia.
El cuestionario es opcional y anónimo. Los datos obtenidos serán usados para cálculos estadísticos y para poder tener una mejor percepción sobre la historia natural de la acondroplasia.
Por favor, considere e intente responder. Si usted desea responder a las preguntas más tarde, puede presionar el botón en la parte superior "Inscribirse en BA"


29th May 2020 - UPDATE

In 2019, Beyond Achondroplasia supported a multinational study for the validation of the linguistic review of a questionnaire on achondroplasia. 75 parents from 15 countries were interviewed for this project.

This year, The Brod Group, a science-based health outcomes research group, requested Beyond Achondroplasia support to share information about the study ongoing in the USA and invited 15 parents/ guardians of children with achondroplasia under 2 years old AND 15 children between 9 to 17 years-old for individual telephone interviews, living in the USA. Currently, 14 parents are joining and 14 children.


INTERVIEW STUDY TO PILOT TEST A SURVEY ON CHILDREN’S AND PARENT’S EXPERIENCES WITH ACHONDROPLASIA 


For this study:

  • Participants will be asked in a phone call interview about their opinion about the content of the Survey on children's and parent's experiences with achondroplasia, asked questions about their experience completing the survey, and some background information about themselves and/or their child with achondroplasia. 
  • What participants say during the interview will not be shared with their doctor or other healthcare provider and will only be used to improve the understanding of the experiences of children with achondroplasia, as well as the parents for this survey. 
  • The phone call interviews will last around 90 minutes for parents and 60 minutes for children and will be conducted from late May to mid-June 2020, according to participants' availability.

 

If you are willing to receive more information and want to participate, please send an email to Esta dirección de correo electrónico está siendo protegida contra los robots de spam. Necesita tener JavaScript habilitado para poder verlo.


Honorarium

To compensate parents for their time for the interview, they will receive $125.

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Muchas gracias.