Friedreich's ataxia
A map of the field of knowledge on Friedreich's ataxia, anonymised, as a demonstration of the method. The medical notice is placed up front.
See a case: Friedreich's ataxiaSPES MED · rare diseases
SPES RARE
It applies the SPES method to rare diseases: it observes how the scientific knowledge about a disease is organised —not the disease itself—. From public sources it builds a map of the structure of the field, auditable back to its source.
What it shows
A map of the knowledge about a disease, in three readings.
How the field is organised
Which concepts structure it, whether it is integrated or fragmented, and how it evolved over time.
Who sustains it
The researchers and centres that structure the field, confirmed by cross-referencing independent sources. In a rare field, knowing that the research depends on few groups is concrete information about sustainability.
Where the structural gaps are
Places where the structure of the knowledge would expect a connection that is not yet there: candidates for research, flagged as candidates, never as conclusions.
The knowledge map
An illustration of how the structure of a field looks: concepts connected by their relationships. Hover over a point to highlight its connections.
Illustrative: it does not represent real data. Colour marks the connection.
What it does not do
The boundary is explicit, and that is what makes it reliable.
- It does not predict which treatment will cure the disease.
- It does not recommend therapies or assess clinical merit.
- It does not guide patients' decisions.
- It does not replace the physician or the researcher: it gives them an auditable structural map.
The engine proposes; the human decides
The engine proposes where to look, with grounds; the human —researcher, physician— confirms and decides. SPES asserts the structure (what is measured) and distinguishes it from the interpretation (what is proposed, subject to confirmation). Its value is traceability and auditability: every structural assertion can be reconstructed back to its public source.
Who it is useful for
Patient associations and research groups that need to organise reliable information and decide where it is worth concentrating effort —not to guide treatment, but to map the terrain of the knowledge—.