A mission serving families and research
Making diagnosis easier and advancing research
The REMEDS platform was born with a twofold objective:
- to map patients affected by MECP2 gene duplication syndrome, a rare disease little known to the public and to the medical world
- to enable families and healthcare professionals to exchange critical information to advance research, by collecting answers to questionnaires provided by users, particularly parents, carers and doctors authorised to manage patients’ medical information.
The project, which ran from February to April 2024, focuses on the elements that are essential for launching the platform, for both the desktop and mobile versions. The whole effort therefore goes into designing the sign-up flow and the submission of patients’ medical information at different intervals, from the home page to data review, including the registration confirmation.
REMEDS's priority challenges
What we learned from families and carers
REMEDS’s potential users are both families with children affected by the syndrome and the doctors involved in the project, such as paediatricians and geneticists. The interviews we ran revealed broad challenges that these users face, as well as specific difficulties they encountered on similar platforms. These stakes line up along four key points: trust, support, accessibility and transparency.
Sharing sensitive information
Families and carers are, in general, hesitant to share very sensitive medical data about a minor. At the same time, the REMEDS team wants to avoid having already-overloaded healthcare professionals fill in records, which means encouraging as much input as possible from families/carers. This challenge calls for a balanced approach to build a climate of trust and make it easier to share essential information on the platform.
Support and follow-up
Another major point is the support that families and carers feel is insufficient: they often notice a lack of follow-up after sharing and submitting information on similar platforms. The absence of feedback, both on their contributions and on the progress of cases, has at times left them in the past with a feeling of abandonment they want to avoid reliving on REMEDS.
Sharing the data back
The REMEDS team aims to offer clear and accessible follow-up to show families and carers how their data contributes to research. That would reinforce their engagement. This is also a key point with regard to the expectations of REMEDS’s partners and sponsors, in particular the pharmaceutical companies, for whom user buy-in and the quality of the questionnaire responses are crucial.
Language barrier and accessibility
Finally, the language barrier risks complicating accessibility. REMEDS should ideally be available in the 24 official EU languages. At a minimum, multilingual questionnaires are essential to guarantee accessibility and avoid bias linked to insufficient command of the language, thus ensuring the responses can be used reliably.
Goal: build an experience centred on trust
A progressive approach
At the start of the project, a research phase across healthcare, medical insurance and the non-profit world helps identify how other platforms approach the issues raised. The good practices we observe are kept for the design phase, in particular around sharing sensitive data, account creation, registering one or more patients tied to the same account, the nature of the information requested, the handling of confidential documents, consent and the follow-up of the patient record. To respond to the central challenge of trust and the sharing of sensitive data, it seems essential to adopt a gradual approach, where critical information is shared progressively. So we rethink each step of the user journey with the project team to embed that principle. The process is now structured in three key phases:
- account creation,
- case/patient registration,
- then the questionnaires accessible after registration is confirmed
This rework allows us to identify the screens to design and the associated specifications. It also brings out a list of questions to put to the technical, legal and medical experts.
Designing a platform centred on people and transparency
From account creation to case follow-up, design choices that simplify and secure the experience
We design the REMEDS screens so that every user (families, carers or doctors) feels confident and supported all along their journey on the platform. From the home page onwards, the platform reassures users by introducing the REMEDS paediatric neurologist explaining how the medical registry works. On the same page, references to the partner associations that offer direct support to families reinforce the platform’s credibility. Finally, the images of the team members, presented on the dedicated “Who is REMEDS” page, allow families and carers to identify the people responsible for managing the data. Each step of the process is transparent: upcoming actions are anticipated, and a continuous thread informs the user about their progress. At any point, the user knows what stage they are at and can see the next steps in the account creation and patient registration process. This effort at clarity reduces uncertainty and sets a climate of trust from the start. The account creation and case registration process balances the sensitive information requested up front with what is asked for later. At every consent or sensitive entry, a note explains the reason for the request. For example, the user’s date of birth is required to meet regulatory requirements, while the patient’s genetic test document and diagnostic details are essential to enable precise analysis by the REMEDS medical team.
Simplifying answers in the face of administrative constraints is a design priority to avoid blockers. The name of the syndrome, for example, varies from country to country (and even within a single country), making it hard for users to enter a precise name in the form. To address that, we let the user add a free-text response or indicate that they don’t know the answer. This flexibility, every time a similar case arises, guarantees a smooth experience.
Keeping the user informed in real time about the progress of their cases is another key design element. Once a request is submitted, its status moves from “pending” to “under review” then to “case confirmed”. With every change, the user receives a notification, and a direct messaging system with the REMEDS team is accessible as soon as registration is confirmed.
We build the diversity of users into the design. Medical professionals can submit questionnaires to the REMEDS team that they want to make accessible to families. The families will receive a notification as soon as a questionnaire that’s relevant to them is available on the platform.
The user dashboard plays a central role in reassuring and supporting families while preserving the anonymity of the information. The user can quickly see the patient cases they have submitted, follow the status of their requests, and access key indicators such as the number of new anonymous cases registered via the platform. Sections like “Activity feed”, “Latest questionnaires” and “Latest news” create a positive dynamic: they show that the platform is moving forward and that the contributions from its users matter.
Finally, we design the main sections (home page, questionnaire registry, activity feed, messaging and account settings) to simplify navigation and offer every user a clear, smooth and reassuring experience.
A soft and reassuring visual identity
At the crossroads of research and people
The REMEDS visual identity has to translate the ambitious vision of a platform that puts people at the heart of medical research. Through its shapes, its colours and its subtle animations, REMEDS wants to feel reassuring, engaging and optimistic. We design a visual identity that rests on its core values: softness, accessibility and trust.
The logo, made of three light, asymmetrical bubbles, symbolises the dynamic balance between the project’s key players: families, the association, healthcare professionals and researchers. These three shapes also echo the main stakes that REMEDS carries: informing, creating connection, and advancing scientific research. Their suspended, almost weightless quality evokes a protective and caring world where every family feels welcomed and supported.
The graphic bubbles from the logo come back as discreet animated backgrounds on the different pages, creating a light, floating effect. This delicate visual world wraps the user in a welcoming cocoon.
Colors play an essential role in conveying this soothing atmosphere. The backgrounds, in sky-blue and pinkish-beige tones, set a warm and delicate setting, far from the coldness often associated with medical platforms. These shades soften the navigation and reinforce a sense of safety and serenity. For the interactive elements and the salient pieces of information, we choose more assertive colours. The light blue, a symbol of serenity and reliability, naturally guides the user toward the main information. The soft yellow and orange, which highlight elements to push forward, embody positive energy and hope while bringing the interface to life.
The pages, with their clean and airy feel, contribute to reassuring users and offering them a smooth experience.
The typographic choices support this identity: the headings, sober and legible, ensure a clear visual hierarchy, while the body text supports smooth reading. These choices comply with RGAA accessibility standards.
