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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"
Ir al cuestionario En este momento, no No, gracias

Health Supervision for People With Achondroplasia

2nd June 2020

The original publication from 2005 "Heath Supervision for children with achondroplasia" has been a landmark on the follow-up of infants and children with achondroplasia, yet the very much needed resources on the adult and senior age were practically not mentioned.
The updated version "Health Supervision for People with Achondroplasia" by Hoover-Fong J, Scott C, Jone M, 2020 does not present much newer information. The growth curves presented are from 0 to 18 years old, not including weight per height curves. Also, the adults' section is very limited as it was in the 2005 version and more information on adult follow-up is absolutely needed, and as an example, nutritional related aspects as weight and body mass are life long relevant aspects and its assessment during adult age can be critical for Quality of Life.
Nevertheless, this was a needed review, and Thank you very much to Julie Hoover-Fong for her perserverance on dedicating time and working on achondroplasia for so many years!

 
HAP ACH



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