Rare Disease · France · In-Market

FR PNH KOL Mapping

Saint-Louis Hospital anchors France's MaRIH-coordinated PNH reference network of 14 competence centres, but only 24 of the 50-plus centres in the national clone-observatory network actively report into it. That kind of institutional structure is exactly what this workbook sizes before any individual name enters it.

6-sheet workbookK1-K6 gatesIn-MarketUpdated Q3 2026
Market GCC (Gulf) United Kingdom France Stage
The Landscape

Saint-Louis Hospital coordinates 14 French PNH competence centres, but only 24 of the 50-plus centres in the national clone-observatory network actively report data.

French PNH expertise is organised, not scattered, around a single MaRIH-coordinated reference structure. Saint-Louis Hospital (AP-HP) in Paris holds the national reference centre for PNH, coordinating a network of 14 adult and pediatric competence centres across the country, including Robert-Debré Hospital, the pediatric competence site in Paris. That structure sits inside the Filière de Santé Maladies Rares Immuno-Hématologiques (MaRIH), France's designated rare-disease network for immuno-haematological conditions. Our KOL Universe gate (K1) starts by mapping this reference-and-competence-centre hierarchy before any single physician is scored.

A second, overlapping structure matters just as much for tiering: the French National Observatory of PNH Clones, a flow-cytometry harmonization network launched in 2010 spanning more than 50 French-speaking centres, of which only 24 currently submit validated clone data. A physician practicing at Saint-Louis, the coordinating reference centre for both structures, carries different scientific weight than one at a competence centre that participates in neither network, and our Tier Classification gate (K2) scores that distinction directly, alongside authorship on the PMSI-derived national cohort studies that increasingly anchor French PNH epidemiology. No named individual enters the workbook without a verification tag. Every KOL identity is checked against live publication records and institutional affiliations, then marked Verified, Industry benchmark, or Requires client validation.

1
national reference centre, Saint-Louis Hospital (AP-HP), coordinating the French PNH network under MaRIH
14
adult and pediatric competence centres in the MaRIH-coordinated French PNH network, including Robert-Debré Hospital
24 of 50+
centres actively submitting validated clone data into the French National Observatory of PNH Clones
REFERENCE CENTRE STRUCTURE

France's PNH reference network, one coordinating hospital, 14 competence centres, and a 50-plus-centre observatory

Institution / NetworkLocation / ScopeRole in Network
Saint-Louis Hospital (AP-HP)ParisNational reference centre; MaRIH-coordinated
Robert-Debré HospitalParisPediatric competence centre
14 competence centres (MaRIH network)NationwideAdult and pediatric competence sites
French National Observatory of PNH ClonesNationwide (24 of 50+ centres reporting)Flow-cytometry harmonization and clone-validation network

Sources: MaRIH (Filière de Santé Maladies Rares Immuno-Hématologiques) reference centre documentation; First Interim Analysis of the French National Observatory of Paroxysmal Nocturnal Hemoglobinuria Clones, Blood 130(Suppl 1):4960, 2017.

Commercial Questions

What this workbook answers

Every section answers a named commercial question your team is asking, scoped to your asset.

01
Which French institutions actually coordinate PNH reference and competence-centre care, and how is that structure organised?

Delivers

  • The Saint-Louis Hospital-coordinated, 14-competence-centre MaRIH network
  • reference-centre structure as a KOL-tiering signal
  • K1 KOL Universe Sizing methodology
02
How does AXLRx tier scientific influence across a reference-and-observatory network without relying on publication count alone?

Delivers

  • K2 Tier Classification methodology
  • dual-network participation (MaRIH competence centre plus clone-observatory reporting) as a weighting input
  • K3 Scientific Influence scoring inputs
03
What verification standard does every named KOL have to clear before shipping in the workbook?

Delivers

  • The three-tag verification protocol (Verified/Industry benchmark/Requires client validation)
  • live publication and institutional-affiliation cross-checks
  • why no placeholder name ships unflagged

Custom workbook delivered in 72 hours.

Commission This Workbook
Contents

What's inside

Rare Disease · 24–32 pp · In-Market · Analyst report + Excel model + PowerPoint readout

1 The Binding Constraint 2 pp
  • Why institutional concentration, not scattergun individual outreach, is the single variable this workbook sizes first
  • Pressure-tested against the Saint-Louis-coordinated MaRIH network case before the rest of the workbook is built out
2 KOL Universe (K1) 4 pp
  • Every French PNH KOL sized and sourced from publication and institutional-affiliation data
  • The Saint-Louis Hospital-coordinated, 14-competence-centre MaRIH network as the sizing anchor
  • Universe boundaries: who counts as a KOL versus a high-volume prescriber
3 Tier Classification (K2) 3 pp
  • Scientific-influence scoring across MaRIH competence-centre role and clone-observatory reporting participation
  • What separates a Tier 1 KOL from a high-volume community prescriber
4 Scientific Influence (K3) 3 pp
  • Influence inputs: PMSI-cohort authorship, observatory-network reporting, institutional role
  • Cross-checked against independent publication and citation data
5 Engagement Readiness (K4) 3 pp
  • Readiness scoring and channel recommendations per KOL
  • Sequencing implications for MSL deployment
6 MSL Territory Coverage (K5) 3 pp
  • Territory-to-KOL coverage map across Paris and the 14 regional competence centres
  • Where current MSL deployment has gaps
7 Cross-Border Network (K6) 3 pp
  • Multi-market reach for KOLs active beyond France, across EU5 and wider European registries
  • Implications for coordinated versus purely local engagement
8 Client Alignment Questions 2 pp
  • The open KOL-engagement questions your medical affairs team must close
  • Structured for an internal alignment session before MSL deployment
Appendix and source ledger included · 45-minute analyst readout included with delivery
Formats

Included with every brief

PDF
PDF Brief
KOL Mapping Brief — Summary Edition
PDF summary brief: tier strip, KOL universe table, and geographic breakdown for France PNH.
XLS
Excel Model
KOL Mapping Workbook — Excel
6-sheet editable workbook: KOL Universe, Tier Scoring, Engagement Calendar, MSL Territory, Cross-Border Network, Evidence Register.
Methodology

How AXLRx builds this workbook

Prepared by MoatRx analysts.

Every AXLRx KOL workbook is built from live publication records and institutional-affiliation data, not secondary summaries. No KOL name ships without a verification tag.

France PNH KOL sources: MaRIH (Filière de Santé Maladies Rares Immuno-Hématologiques) reference centre documentation and the First Interim Analysis of the French National Observatory of Paroxysmal Nocturnal Hemoglobinuria Clones, Blood 2017, plus the institutional affiliations named in that documentation.

  • Saint-Louis Hospital coordinating role and the 14-competence-centre count verified against MaRIH reference centre documentation
  • Observatory network size (50+ centres) and active-reporting count (24 centres) verified against the First Interim Analysis of the French National Observatory of PNH Clones, Blood 2017
  • Every KOL entry in the underlying workbook carries a three-tag verification status before delivery: Verified, Industry benchmark, or Requires client validation
FAQ

Frequently asked questions

Deliverables
What formats are included with every workbook?
Every commissioned KOL Mapping workbook includes an editable 6-sheet Excel workbook (KOL Universe, Tier Scoring, Engagement Calendar, MSL Territory, Cross-Border Network, Evidence Register) and a PDF summary brief. No PowerPoint deck: this deliverable is built to be worked in directly. An optional 45-minute analyst readout call is included.
Sources
How are KOL identities and rankings verified?
Every KOL entry is built from live publication and institutional-affiliation data, then tagged Verified, Industry benchmark, or Requires client validation. No name ships unverified.
Customisation
Can I scope this to a specific institution set or region?
Yes. The intake form captures your indication, geography, and institution scope. A scoping call confirms scope before research starts. Commission via the intake form to start.
Get Started

Commission this workbook

AXLRx delivers KOL mapping workbooks built for medical affairs and commercial teams engaging France PNH specialists. Custom workbook in 72 hours.

1
Submit your request

Specify your indication, geography, and institution scope.

2
Scoping call

AXLRx analyst confirms institution scope and verification standard before building.

3
Delivery

Research-verified KOL workbook in 72 hours with optional analyst readout.