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RECRUITINGOBSERVATIONAL

Self-questionnaire in Osteoporosis

Clinical Validation of a Self-questionnaire in Adults With Osteoporosis

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

Osteoporosis is a multifactorial disease in which genetic predispositions play a key role in its development. A better understanding of family history and clinical manifestations among first- and second-degree relatives can help improve early detection and personalized care for at-risk patients. To this end, we will test a self-administered questionnaire previously developed by our research team. This questionnaire includes the main manifestations associated with rare genetic bone diseases such as osteogenesis imperfecta, hypophosphatasia, and osteopetrosis.

Who May Be Eligible (Plain English)

Who May Qualify: - Adult over 18 - Followed by the rheumatology or endocrinology clinics at the CHUL (CHU de Quebec-Universite Laval) - Suffer from osteoporosis - Have internet access Who Should NOT Join This Trial: - Unfit, unable to consent, unable to answer a questionnaire, unknown family history (e.g. adopted person) Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
Inclusion Criteria: * Adult over 18 * Followed by the rheumatology or endocrinology clinics at the CHUL (CHU de Quebec-Universite Laval) * Suffer from osteoporosis * Have internet access Exclusion Criteria: * Unfit, unable to consent, unable to answer a questionnaire, unknown family history (e.g. adopted person)

Treatments Being Tested

OTHER

Self-administered questionnaire

The self-administered questionnaire was previously prepared by the research team for another project. It includes 14 questions addressing the dentition, fractures, joint hypermobility, height, and eye abnormalities present in the participants or their relatives. This questionnaire covers the clinical manifestations of rare bone diseases such as osteogenesis imperfecta, pycnodysostosis, hypophosphatasia, and osteopetrosis. This self-administered questionnaire will be filled online by participant. Average completion time of 20 minutes.

OTHER

Family tree

For the family tree, this step is done by a telephone interview lasting a maximum of 45 minutes, depending on the size of the participant's family. The researcher will be able to reconstruct the family history with the index case. The family tree will then contain the family history up to the second degree of kinship with respect to the index cases. The information collected through the index cases when creating the family tree must include, for each relative, biological sex, as well as information on the presence or absence of a rare or genetic bone disease and clinical signs associated with these diseases, such as short stature, bone deformities, deafness, eye problems, etc.

Locations (1)

CHU de Quebec-Universite Laval
Québec, Quebec, Canada