Researchers from Indiana University School of Medicine and other institutions around the world can access data about bone and muscle health collected by the FIT Core. They will not have identifiable data (e.g., name, address, phone, etc.). Using this data, researchers work to improve our understanding of musculoskeletal disease or disorders.
How is my data stored?
OnCore
Data that is collected in the FIT Core is transferred to a data infrastructure called OnCore. This is a data platform that is approved by the Indiana University institutional review board.
Indiana Biobank
The FIT Core closely collaborates with the Indiana Biobank, which is part of the Indiana Clinical and Translational Science Institute. Each sample of blood or saliva that is collected gets packaged and sent to the Indiana Biobank. Here, the samples are stored in a way that removes any information that could identify you. If a researcher expresses interest in using the samples, then we work with the study team to assure the use of the samples are appropriate for the research design or question.
Publications and studies using FIT Core data
Stress fractures are a type of bone stress injury, or an inability of the bone to tolerate repeated loading (such as walking or running), which leads to bone weakness and pain. Grading this bone stress injury can distinguish potential severity and may be used to predict return-to-sport. If imaging is performed (e.g., high resolution computed tomography), the bone stress injury should be assigned a grade to better communicate the degree of injury as to serve as a guide for returning to sports.
Friedreich Ataxia is a rare and often fatal disease that affects an individual’s metabolism. Specifically, these patients lack a specific protein called frataxin. In order for therapeutic interventions to develop, a better understanding of biomarkers (e.g., proteins measured from a routine blood draw) need to be studied to distinguish which proteins are being disrupted in this population. This study team analyzed protein markers in 10 Friedreich Ataxia patients using plasma from participants willing to give small samples of blood. Then, with the help of the FIT Core, were able to use samples from 11 age and sex matched participants to compare their results with healthy, “normal” individuals. These “normal” individuals are called controls in research, and without the help of our FIT Core participants, these researchers would not be able to recognize the abnormalities that were occurring in Friedreich Ataxia patients.
Female runners have high rates of bone stress injuries, including stress reactions and fractures. The current study explored multidirectional sports played when younger as a potential means of building stronger bones to reduce bone stress injury risk in these athletes.
In this study, researchers sought to determine if certain markers in our blood called L- and D-BAIBA are related to an individual’s physical performance and body composition (i.e., fat mass, muscle mass, and bone density). Making this type of connection helps researchers understand differences in people who are “high” and “low” performers (i.e., greater 6-minute walk distance). The groundwork laid out from this research helps future studies develop ways to understand the mechanisms responsible for these marker differences in order to develop targeted therapeutic interventions.
What do they do with my data?
Your data is unique to you — like a library book is unique to a title and author. In research, we may want to compare different 'books' to each other in order to answer different questions. So, for each question, the researcher requests specific 'books' to check out of the library to answer their specific question. Indiana University committees oversee the proper use of these books.
Who has access to my data?
Only team members with specific training have access to data from FIT Core participants. This involves following specific regulatory guidelines designed to prevent the loss of confidentiality. Data transfers are de-identified, which removes specific information that could be used to identify someone (e.g., name, address, job title, etc.). Additionally, the program navigator facilitates data transfer agreements and works with the study team to ensure proper usage of the requested information. A unique FIT Core ID can be linked to a participant's medical record number allowing researchers to examine past medical history. This is important because it helps researchers distinguish between certain conditions or predict health outcomes.
To summarize, the transfer of your data requires:
- Collaboration with our study team and detailed understanding on how the information will be used
- Removal of all information that could be linked to the participant
- Regulatory documents