I-SHARE: Share Your Treatments and Outcomes
We regard our relationship with you, the patient, as a partnership in discovery. The I-FIND program will allow you to learn about many of the therapies that hold scientific promise. Many patients like Joe will work with their physicians to design a personalized protocol. Such treatments are being tried on a daily basis all over the world but the data generated as a result is not captured and hence is not helping other patients who are in similar situations.
In the I-SHARE program, we aim to capture the observations of such 'one of a kind' treatments so we can all learn from them in real time. Essentially, you will use a web-based reporting system to provide certain basic clinical information about your diagnosis, the treatment options you have elected and the resulting outcomes. The health record you create will be anonymous and you will have complete control over it. You can use it to monitor your own progress, share it with family and physicians to get a second opinion, and share the information with other patients like you.
We will analyze this information on a frequent basis to look for patterns and give you feedback of which therapies appear to work and which do not. In this way the data from your treatment will be of value to you and to others.
By participating in I-SHARE, no matter what option you choose - standard of care, clinical trial, or "scientifically promising option", you will be part of a collective patient driven discovery effort.
The major advantage of this approach is that it is cost-effective and may result in rapid patient "enrollment" since there is no geographic limitation. For rare diseases and even for common tumors (with each patient carrying a unique combination of mutations in their tumor), one might argue that this approach is the only way to go, since formal trials may be impossible to carry out in one location or very difficult to coordinate across the many locations necessary to get enough data accrual.
The major challenge is data reliability. We believe that if the outcome parameters are clearly defined and can be objectively evaluated (e.g. PET scan or CT data, survival), there will be considerable value in this approach, especially to obtain an early signal of whether a given therapy may be working and is safe. Also, over time, as newer and more sophisticated diagnostic tests, such as tumor mutation analysis become available, we expect that the value of I-SHARE data will increase substantially. It may turn out that certain tumors with specific mutations may best respond to certain therapies and this correlation may become evident quite rapidly via I-SHARE.
The hypotheses so generated can then be formally tested via clinical trials I-FUND.