How the Football Players Health Study Stores and Shares Your Data
The Football Players Health Study (FPHS) includes many research studies. We may combine the information collected from you during this study with results from any other FPHS studies that you have been involved in – such as completing a questionnaire. Your information may also be connected to any future FPHS studies that you are a part of. This includes studies that may be done by other researchers who work with the FPHS. We do not know how many future studies we will have, but there will be many over several years. When you participate in a FPHS project, you are agreeing to allow us to collect and store the data from the project for several years. This is useful and important as it allows us to look at changes in health and wellness over time in former football players.
Your name and personal information (information that can identify you) are connected to a code that the FPHS has assigned to you. This code is connected to the data that is collected from you in any FPHS study that you participate in (for example, answers to questionnaires, medical history, or results of a scan). The key to this code is stored in a secure file that is kept separate from your study data. Only trained members of the FPHS staff will have access to the key to this code. All of your personal information is stored in a secure database at Harvard separately from the study results. In addition, the ID number that is used for the TeamStudy App is different from your FPHS code.
The Football Players Health Study works with other local researchers or researchers in other states or countries. If a researcher wants to use data from the FPHS, they must make a request in writing. They must describe what type of research they want to do and what type of information they need. In most cases, we will share information that is assigned a code and the researcher will not receive any information that can identify you.
There will be occasions that a researcher working with us will require access to your personal information. For example, if we are working with a researcher who is doing in-person research, they may need your name and contact information to make arrangements for you to come for the study. In such cases, we will never share the information without first contacting you to see if you are interested in the specific study and to get your permission to share your information. We will not share your personal information without your permission.