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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" Identifier: NCT03780153

Active study but not recruiting

This study aims to investigate the degree and extent of spinal stenosis, chronic pain, sleep apnoea, impaired hearing, cardiovascular risk factors, and body composition in Norwegian adults with achondroplasia. The study will also explore these factors' impact on physical function, ability to perform daily activities, work participation, and needs for assistive devices and social benefits. The study is conducted in collaboration with the Norwegian Restricted Growth Association, and TRS National Resource Centre for Rare Disorders, Sunnaas Rehabilitation Hospital, Lovisenberg Hospital, and Oslo University Hospital.

Study Type  : Observational
Actual Enrollment  : 50 participants
Observational Model: Cohort
Time Perspective: Cross-Sectional
Official Title: The Norwegian Adult Achondroplasia Study
Actual Study Start Date  : March 1, 2017
Actual Primary Completion Date  : March 31, 2019
Estimated Study Completion Date  : January 31, 2022

Study Population - Adults 16 years or older with achondroplasia

Inclusion Criteria:

  • Residents of Norway
  • Aged 16 years or older
  • Clinical and genetic diagnosis of achondroplasia
  • Speak and understand the Norwegian language.

Exclusion Criteria:

  • Severe cognitive deficits, mental illness or substance abuse
  • Having a medical condition making them unable to participate in the study.

Study Director: Vegard Strom, Phd Sunnaas Rehabilitation Hospital
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