Oriol Borrega
Analyst programmer at Òmada Interactiva

Some ideas behind the technical design of Share4Rare

Two computer screens, one is programming
Which are the main ideas behind the technical design of the Share4Rare platform? A clue: they have to do with giving and taking, loops and intuitive design.

Having a black screen as your main tool of trade entails a number of things. One such thing is that you tend to be seen as a mere facilitator, someone whose work is limited to putting the ideas others have had to good use by coding them.

Nothing wrong with that. At the end of the day, someone has to do the coding, and it better be someone skilled. However, it is an oversimplification. And, being an oversimplification, it is often only partially right.

Take, for instance, the case where a consortium of people has the idea to build a tool to do research on rare diseases and bring the different actors across the field together. It is indeed a good idea, so they work on it and pitch it to the relevant institution, and the idea becomes a reality: the Share4Rare project. Their hard work continues and materializes as a list of wishes and requirements, and a sketch of functionalities. They know what they want, they have set their goals, but they have not envisioned the path yet.


How do we get from that sketch, however rich and specific, to Share4Rare? Bringing it down to earth requires taking countless decisions, both small and big. The process itself is transformative and requires abstraction and conceptualization. Let us illustrate with three short examples.


Share4Rare is about sharing. The naming and the slogan are clear and the idea behind them is a powerful one, yet very abstract. There are so many different ways of sharing so many different things with so many different people in so many different contexts!

How does Share4Rare embody the idea of sharing? It is not easy: ask to share too much too soon, and you will become too aggressive; ask to share too little too late and it might be just insignificant; give nothing in return and most people will gladly ignore you.

We have already explained how we embraced the idea of approaching user interaction in a flexible manner. However, we have not explained that the main idea behind allowing users to share gradually was to get to know them gradually too, to accompany them in the process of contributing to the platform so they got something in return at each meaningful step.

Getting to know you all a bit better step by step

That is how the brilliant minds of some of the technical partners of the platform laid in front of us the path to follow. In essence, as we know you better, we can give back more meaningfully: better predictions in the questions that will interest you, better connections to other users, more studies available, more interesting contents. Giving, therefore, becomes reciprocal and mutually beneficial.

Asking in a loop

Let’s move on to a more practical example. Soon you all will be able to take part in research studies (after registering!). Among other things, what you will discover then is a polished tool for managing research questions and questionnaires that ensures data usability and cross-comparison. Nevertheless, research questionnaires can be difficult to design, set up and navigate, especially if both questions and answers come with a lot of requirements for normalization.

Developers at Share4Rare came with a couple of really clever ideas to try to maximize flexibility within the rigid margins they were given to work with, both on the part of the asker and the answerer. A good example of that is the possibility to create subsets of questions within each questionnaire and knot them together using a loop question. Depending on the answer provided in that question, the loop will trigger one time, twice, three times… or none.

Asking in a loop
The Droste effect: recursion has many applications

Better yet: these bundles of questions can be reused over and again across studies! And the loop question can be any regular question, appearing either as the first one of the group or as the last one.

Neat, isn’t it? There was quite some excitement around our premises among the tech guys about this!

Setting a state of mind

One of the latest additions to the platform was the Dashboard you all find when you log in. After having developed most of the functionalities of the community, and when we thought we were ready to launch, somebody raised a hand and let us know that navigation within the platform was not as pleasant and intuitive as it deserved.

Back to our desks, we came up with this pretty little personal space full of pretty little personalized widgets, benchmarked some alternatives from other sites, and presented our latest development idea to the rest of the partners.

Welcome to S4R
Welcome to Share4Rare!

The dashboard now serves as a distributor for the activity of each user in the platform. It is also a space for communication among users and with the consortium. And, maybe more importantly, it helps welcoming users to the experience of the platform by giving them a familiar space where they can easily find the latest updates affecting them.