Request Data

If you are interested in accessing IMPACT data for a specific project, please submit your details here and the Data Management Committee will be in touch to discuss what is possible.

IMPACT Survey data requests are open to OI researchers, OI organisations, companies, and governments. Only specific data requests will be considered by the Data Management Committee, and will be judged on their value to the OI community. A full transfer of the IMPACT dataset will not be considered. Requests from national OI organisations for existing country-level data from the existing data cuts to support local policy work are welcomed. Other data requests may need to be supported by funding from those requesting the data; the cost will be determined following interaction with the Wickenstones team who will be able to scope out the work needed to fulfil a given request and/or liaison with Mereo BioPharma, where relevant.

All requestors must agree that they will share their output and analyses results with the IMPACT Survey Steering Committee once published. These will be shared with the OI community through this website.

Because of this, open access articles are strongly preferred and should be considered as part of funding for IMPACT data requests.

Data requestors must agree that the data be used only for the purpose agreed by the Data Management Committee and should not be shared or forwarded without permission of the Data Management Committee.

Name of principal investigator

First Name

Last Name

Affiliation

Mailing address

Address 1

Address 2

City

State/Province

Zip/Postal Code

Country

Email address

Phone

Country

(###)

###

####

Details of the type of data requested

Purpose for which the data will be used

Please provide an explanation of the benefit of the project to the interests of people living with osteogenesis imperfecta

Declaration

I agree that any publication, press release, or other document that uses the data will reference and acknowledge Dr Frank Rauch and the OI organizations. Manuscripts will include the following statement: “The authors would like to thank Dr Frank Rauch and the OI organizations for the use of participant data to conduct this survey. We also thank the participants and caregivers for their contributions to the IMPACT Survey dataset.”

Sharing

I agree that I will share the output and analyses results with the IMPACT Survey committee once published, so they may be shared with the osteogenesis imperfecta community on the IMPACT Survey website.

Use & Storage

I agree that my data may be used and stored by the parties behind the IMPACT Survey (the Data Management Committee, Osteogenesis Imperfecta Federation of Europe, Osteogenesis Imperfecta Foundation, Wickenstones, and Mereo BioPharma) in order to process my data request.