The Project is designed to improve patient care and drive musculoskeletal research. Your participation will help to: - help find meaningful treatments for disease and injury - help improve care for individuals affected by diseases and injuries - learn how to participate in important research being conducted by top researchers.

When you create an account with the Project you will be prompted to consent and complete various questionnaires that are important to the development of bone and Joint health research. Questionnaires will collect various demographic, health history, and quality of life information (depending on the study). With information from yourself and thousands of others researchers can analyze the data to look for different ways to improve patient care and our understanding of bones and joints!

Scientists and other stakeholders studying the musculoskeletal system may approach the registry to ask for access. If granted they will be able to obtain data for use in expanding their research studies, but they will not be able to access your identifying information. Access to collected information is strictly controlled through an approval process to protect patient privacy. - Notifying patients of clinical trials and other research opportunities - Developing standards of care and improving adherence across the country - Advocacy efforts of patient organizations - Research to understand the quality of life impacts on patients and families - Research to better understand health - Clinical research for new therapy development.

Your personal information and anything that could be used to identify you will always be kept secure and will only be seen by researchers. To keep track of your data will be assigned a coded number that will be used in place of any identifying information. The data is managed by Lumiio Inc. a Calgary-based company focused on world class data security protection of patient data. Your data will never be sold, redistributed, shared, or used outside of the project. Lumiio has strict policies in place that restrict any member of the research support team from viewing patient data, with the exception of to resolve issues. The data storage and management processes utilized by Lumiio have undergone stringent review from the University of Calgary Information Technologies team and uphold top data security regulations such as SOC-II type I, and is fully PIPEDA, HIPAA, and GRDP compliant. Please reach out to either your team at Lumiio directly at info@lumiio.com if you have any questions about data management policies.

Absolutely. Many safeguards are in place to ensure your information is only used in ways that you have agreed to and that identifying information about you can never be released without consent.

While this varies for each study, the platform can manage both youth and adults interested in participating in research.

If you would like to participate in the registry, you will need to register and provide your consent. Please create an account by registering at XXX and fill out and sign the consent form. If you have any questions, please contact us at info@lumiio.com