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Living with Osteogenesis IMPerfecta: understAnding experiences based on Community insighT & evidence
The objective of the survey is to generate a scientifically validated international dataset that will capture the socioeconomic impact that OI has on people’s lives and national healthcare systems.
The overall survey results will be published, and consolidated national datasets will be provided to the OIF and OIFE member organisations to support country-level policy work.
Please help us to create strong data that represents the whole OI community to support the advocacy efforts of national OI organisations by participating in this survey.
Welcome to the
The IMPACT Survey will be launched at the end of June 2021. It will be available in multiple languages to be accessible to as many people in the OI community as possible.
This is a one-off survey and all information provided by participants will be anonymised and treated confidentially. No personal identifiable information will be collected. All responses will be securely stored by a third-party scientific agency, according to Data Protection Regulations.
Once the first analysis of the survey results is completed, the data will be transferred to a Data Management Committee, comprised of representatives of the OIF and OIFE, and chaired by Dr Frank Rauch. In agreement with the OIFE and OIF, the results will also be shared with Mereo BioPharma and its partners for use in planning any potential future pathways for OI treatments that may be evaluated by national payer authorities. Any other use of the survey data will require the express permission of the of the Data Management Committee.
Updates will be posted on the websites of the OIF, OIFE and the OIFE national member organisations. Currently, a dedicated IMPACT Survey page is available on the OIFE website for further information about the project and its purpose.
†Giving your email address is voluntary. It will be processed by Wickenstones Ltd, who will be the Data Processor in compliance with UK Data Protection legislation, and it will not be shared with any other party. Your email address will be kept until the completion of the OI IMPACT survey, no later than 10th September 2021. After this date your email address will be permanently deleted from our records. The lawful basis we are relying on to process this data is legitimate interest. Your email address will be used to send you a maximum of 2 reminders to complete the survey after you have registered interest. If you decide to complete the survey, it will not be possible to match your eventual survey response (if any) to your email address. Providing your email address will not affect the anonymity of your survey response.
If you are in the UK, EU or EEA you have the following rights under General Data Protection Regulation:
the right of access
the right to rectification
the right to erasure
the right to restrict processing
the right to data portability
the right to object