Private data is something you, and no other patients, can see. This includes address, date of birth, and might include a personal log of problems, side effects, stresses and so on. On the other hand, another patient might choose to make some of this type of data public.
Public data are things like blood results, pain scores, fatigue scores, functional indices, diagnoses, and main drug treatment.
Each month, or whatever interval you find convenient, you use your web browser to enter your data in forms. You include such scores as mentioned above as well as changes in medications, and side effects. You can continue to do this as long as you maintain an interest, until you get cured, or until the study terminates. There is however no set termination date. The study will continue for as long as there is funding available.
