Join the Registry (see below), and if you wish, you can obtain your personal measure on the IBM Personalized Index Calculator developed by our research team with the data from our national survey. By answering a few short questions about yourself, your medical history, and your physical functioning, the Calculator will provide you with a personalized graph showing you how your score on the IBM functional rating scale (a measure originally developed by C.E. Jackson and Colleagues) compares to that of all the patients in our survey. The Calculator is completely free, completely confidential, and we will never save or share any of the information you type into it.
In order to maximize response rates and protect patient confidentiality, we designed the original survey instrument as a one-time, anonymous commitment for participants. Sadly, this decision made it impossible for us to reconnect with the original survey participants. We have no way of following up with additional questions or of collecting longitudinal information on disease progression over time. We are also unable to alert our survey respondents to new findings, publications, and resources.
You can help us to maintain, update, and improve the Registry and to make the most of the information we have collected. Joining the Registry and providing us with your contact information is free and does not obligate you in any way to participate in any further surveys, if you don’t want to. We will never share your contact information with anyone else, without your express consent. And you can ask us to remove your name at any time.