Solutions · Rare disease
Every conventional method of building a target list in Japan starts from what has already been prescribed. For a rare disease entering a market with no prior treatment, that starting point does not exist — and the two fallbacks, the diagnosis code and the advertised specialty, both fail for reasons specific to how Japanese healthcare records work.
Not a data quality problem. A definitional one.
Claims data tells you what was billed. If nothing has been billed for your indication, the record is empty — not sparse, empty. And where a diagnosis code does exist for the condition, it is usually broad enough to return a list far larger than the population you are looking for, with no way to narrow it.
The advertised specialty does not rescue this. Japanese medical institutions choose which specialties to display, and the choice is not a claim about what they treat. For a condition where the diagnosing physician might sit in neurology at one hospital and internal medicine at another, filtering on the displayed specialty produces a list that looks plausible and misses most of the people you need.
So the question becomes: if you cannot find them by what they have prescribed or what they call themselves, what is left?
Both work from evidence that institutions and doctors publish about themselves, rather than from billing records.
Axis one
Japanese medical institutions publish a great deal about themselves: which conditions they treat, which tests they run, which specialty clinics they hold and on which days, what equipment they own.
SCUEL RD reads those websites and identifies the institutions treating a given condition, running a given test, or holding a given specialty clinic. It reaches facilities that claims data cannot see, because it is looking at what the facility says it does rather than at what it has billed.
Axis two
A physician's expertise leaves a public trail: the trials they have run, the research they have been funded for, the societies that have certified them, the conditions they name in their own profile.
We convert that trail into controlled-vocabulary tags, drawn from eight separate sources and normalised so that variant spellings collapse to one term. Interstitial lung disease appears in Japanese profiles as ILD, as the full English phrase, as diffuse parenchymal lung disease, and in several Japanese forms — all of which resolve to a single tag.
The facility axis alone gives you buildings without telling you who inside them to approach. The physician axis alone gives you names without telling you whether their institution can actually run the test your product depends on.
For a rare disease the intersection is usually small — which is the point. The work is not finding a large list. It is finding a defensible one.
Designations and networks that exist because of how Japan administers care for intractable diseases.
Rare disease is not a segment we added later.
We met someone with a rare disease whose diagnosis had taken ten years to arrive. Not because the treatment did not exist, but because no one could tell them which hospital to go to.
The company started in 2010 as a hospital search service for patients with intractable diseases, and what that work taught us was that the quality of the match depends entirely on the quality of the underlying database. The designations, the research records, the specialist qualifications on this page are in SCUEL because that was the problem we set out to solve. More about us →
Tell us the condition and what you are trying to decide, and we will come back with what we hold, what it costs, and what it will not tell you. Working with us from outside Japan? Read how engagements run — correspondence is in English, reports are written in Japanese.
Engagements typically start from several million Japanese yen — indicatively, tens of thousands of US dollars. The US dollar figure is for scale only and is not a quoted price. Scope, coverage and contract term determine the final figure.
