Patient-reported outcomes instruments are questionnaires that assess an individual's perception of his/her Health-Related Quality of Life (HRQoL), which includes their perception of their physical, emotional, mental, and social states. A paper on the development of a questionnaire to assess the HRQoL of people with achondroplasia.

Skeletal dysplasias affect multiple organ systems, but how does that influence the way people who have these diseases see themselves and their lives? This paper aims to quantify the quality of life of people with short stature skeletal dysplasias through a survey.

The Brod Group, a science-based health outcomes research agency, led a multinational research project on achondroplasia, involving parents of children with achondroplasia living in the USA, UK, Australia or New Zealand. It was finalized on the 31st May 2022.

Johannes is a 12 years old boy from Sweden and his father wanted to share his experience to say that if there is a will, there is a way.

The Brod Group, a science-based health outcomes research group based in the USA, is conducting an interview study for a new survey on achondroplasia. Children with achondroplasia living in the USA, aged 9 or 10 yo are being invited to participate.

Ascendis Pharma shared some notes due to the COVID-19 pandemic with patient organizations advocating for achondroplasia to inform patients and families.