Performing a Rare Disease-Oriented Master Observational Trial
“PROMOT” is a 3-year international collaborative research project (2024-2027) supported by the European Joint Programme on Rare Diseases (EJP RD).
Aim
The PROMOT Network Project aims to generate a learning and knowledge mobilization platform (LEAP FORWARD) allowing the development of a precision medicine approach for rare neuromuscular diseases. It combines an innovative natural history study design, the adapted Master Observational Trial (MOT), and artificial intelligence (AI), to help answer the complex challenges regarding prognosis and clinical trial readiness in these rare diseases.
Key steps
PHASE 1
Identify and classify signs and symptoms specific to target diseases, enabling multimodal data collection for optimal disease impact assessment.
PHASE 2
Test MOT among four neuromuscular diseases in multiple clinics (Canada, Spain) to validate feasibility in rare diseases.
OUR LOGO AND
COLOUR PALETTE
The fingerprint
The selection of the fingerprint as the logo for this project represents the identity, history, and uniqueness of all those affected by a rare neuromuscular disease.
Fingerprints are inherently unique to each individual, reflecting their distinctiveness. They are often associated with personal identity and history and serve as a record of an individual’s presence and actions. Just as no two fingerprints are alike, no two individuals affected by a neuromuscular disease experience the same journey or challenges, making them distinct from one another.
The fingerprint logo serves as a powerful symbol of this uniqueness and the importance of acknowledging and respecting the diversity within this community.
The six identification circles
​The logo incorporates six identification circles, each representing one of the six countries around the world collaborating on the project. These circles symbolize the interconnectedness and collaboration among the participating countries, working together in symbiosis towards a common goal.
Through this symbolic representation, the logo underscores the importance of international cooperation and solidarity in advancing research, diagnosis, and treatment for individuals affected by these conditions.
The colour palette
Did you know that purple is the rarest colour to be found in nature?
The choice of the colour purple for representing the project is grounded in its symbolism and rarity in nature, paralleling the rarity of the neuromuscular diseases to be studied in PROMOT. Rare neuromuscular diseases affect a small percentage of the population, making them uncommon and often overlooked.
By selecting purple, it underscores the uniqueness and scarcity of these conditions, drawing attention to the importance of raising awareness and understanding about them. Additionally, purple is often associated with creativity, wisdom, and dignity, qualities that resonate with the resilience and strength exhibited by individuals facing rare neuromuscular diseases and the collaborative efforts aimed at addressing these challenges.
Thus, the colour choice serves as a poignant reminder of the rarity and significance of these conditions within the broader healthcare landscape.