Data Sharing

Introduction

The ImagingDMD study collects raw data from many different sources: magnetic resonance imaging (MRI) and spectroscopy (MRS), genetic diagnoses, demographics, medical history, strength and functional assessments, and biological samples. In addition to the raw data collected, we also perform computations using the MRI and MRS data to produce derived, or secondary, data. We believe that this data set is a unique and valuable resource that may benefit researchers in a variety of disciplines. A summary of the available elements is provided in the Data Dictionary and a description of the ImagingDMD cohort can be found under the iDMD Cohort Demographics section.

Restricted access to raw and derived data (“Restricted Access”)

This data set will include de-identified DICOM image and spectroscopy files as well as tabular data files containing age, height, weight, functional assessment final scores, strength assessment scores, corticosteroid use status, ambulation status, and other information that can be included without compromising subject confidentiality. In accordance with our informed consent form, researchers will be required to apply for access to the data set by submitting the following information, which will be reviewed by an Executive Committee:

• Researcher name(s) and institutional affiliation(s)
• A brief proposal outlining how the data will be used

The request should be submitted to:

Dr. Krista Vandenborne
Director, ImagingDMD

Email Contact: kvandenb@phhp.ufl.edu

If shared data are used in subsequent publications the original funding source (AR056973) and the ImagingDMD network will need to be acknowledged and published methodology developed during the course of the study cited, as appropriate.