Share4Rare’s most frequently asked questions
Over the last year, Share4Rare has gone from being merely an idea to being home for over 1,000 users pushing together against rare diseases. And we expect this to be only the beginning: with the first research studies about to arrive, we know the community will only get larger!
But, if we may borrow from one of the sages of modern times, with great figures comes great responsibility. As people with different backgrounds and different interests come into Share4Rare, it is our duty to meet their concerns and solve any doubts that might arise. To help us do so, let us introduce to you our frequently asked questions.
The first steps in the platform
When it comes down to it, how can you register?
The process is guided and is fairly simple, but you will notice up front that this is not your regular, data thirsty platform. We won’t jump into getting your basic contact data and be happy with it. We will ask you for a bit more so we can give you back a lot.
Maybe the most important aspect when registering is trying to be as accurate as possible when entering the symptoms of the disease. These symptoms are the gateway to a bunch of research functionalities in the platform, mainly surveys and the People Like Me graph that will relate you to other users with whom you will certainly have affinities.
Validating as a user
Once you are registered, why do you need to validate?
As we have already explained, not anyone can register to Share4Rare. Why? Because we value the privacy and safety of our users above many other things. Therefore, we need to put some measures in place to check the veracity of our users while still facilitating the registration flow.
The approach Share4Rare takes is to ask for an informed consent and some proof of diagnose of the patient (or some other clinical evidence if you do not have a diagnosis yet). It helps keeping lurkers away and has the side advantage of advancing in the documentation needed for taking part in research studies.
We care about your privacy
Some users have understandably raised a finger and asked what we will do with your data.
First of all, remember that you will keep control of what you share and how. We will never share your data with anybody unless you explicitly consent to do so, and, even in that case, only in the context of research.
Of course, we handle your data internally (for instance, when calculating which questions will be of greater interest to you). But we use them in an anonymized format that cannot be traced back to a specific user.
In the case of research, it is your decision whether to take part in a study. If you choose not to, even if you are the perfect candidate and your profile data would be helpful for its development, we will not give any piece of your data away.
Participating in research
However… why wouldn’t you want to fight rare diseases by answering research questionnaires?
We know all too well that one of the most important challenges we must overcome in the field of rare diseases is the scarcity of data. Researchers and clinicians usually have a hard time reaching enough people to have significant data.
Share4Rare’s main goal is to become a hub for gathering quality relevant medical information from adult patients and caregivers: only through knowledge will we be able to defeat rare diseases one day. That is what our studies and questionnaires are for, and that is why we ask you to participate. So keep your eyes open because the first research projects are already open!
Of course, the final decision is yours. But, please, just think twice before declining. Thank you!
