Rare Disease · United Kingdom · In-Market

UK Dravet Syndrome KOL Mapping

Six NHS centres, Great Ormond Street, Bristol, Alder Hey, Birmingham Children's, Leeds, and Newcastle, concentrate the UK's refractory Dravet syndrome cohort, and the British Paediatric Neurology Association's Dravet working group shapes NICE evidence review 18-24 months ahead of submission. That institutional network is what this workbook sizes first, not a roster of named physicians.

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

Six NHS centres, not the full 25-centre Highly Specialised Service network, concentrate the refractory Dravet syndrome cohort that any UK KOL engagement plan must be built around.

UK Dravet syndrome refractory care concentrates at a small number of NHS specialist paediatric epilepsy centres, not across the full 25-centre Highly Specialised Service network. An estimated 600-900 of the UK's 2,000-2,500 Dravet patients remain inadequately controlled despite NICE-commissioned cannabidiol and fenfluramine combination therapy, and that refractory cohort concentrates at six named centres: Great Ormond Street Hospital (GOSH), Bristol, Alder Hey, Birmingham Children's Hospital, Leeds, and Newcastle. That concentration is what a UK KOL engagement plan should be built around, not a roster of individually sourced physician names. Our KOL Universe gate (K1) starts by mapping exactly this institutional concentration before a single physician is scored.

That structure changes how AXLRx tiers influence in the UK. The British Paediatric Neurology Association's Dravet working group is the single most consequential engageable body in this network. Its clinical guidance shapes NICE evidence review directly, and pre-launch engagement 18-24 months ahead of a NICE submission is standard practice. Our Tier Classification gate (K2) scores institutional role and working-group participation alongside refractory-cohort caseload, and 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, the same three-tag discipline used across every AXLRx KOL Mapping workbook.

6
NHS specialist centres concentrating the UK's refractory Dravet syndrome cohort: Great Ormond Street, Bristol, Alder Hey, Birmingham Children's, Leeds, and Newcastle
600-900
UK Dravet patients inadequately controlled despite combined cannabidiol-plus-fenfluramine background therapy, the addressable refractory population
18-24
months ahead of NICE submission that the BPNA Dravet working group is engaged, per standard UK pre-launch sequencing
6
KOL Mapping gates (K1-K6), each independently verified before a name enters the workbook
REFRACTORY-COHORT NETWORK

The UK Dravet syndrome refractory-cohort network — six NHS specialist centres

InstitutionRoleEngagement Relevance
Great Ormond Street Hospital (GOSH)NHS specialist paediatric epilepsy centre, LondonRefractory-cohort concentration site
BristolNHS specialist paediatric epilepsy centreRefractory-cohort concentration site
Alder HeyNHS specialist paediatric epilepsy centre, LiverpoolRefractory-cohort concentration site
Birmingham Children's HospitalNHS specialist paediatric epilepsy centreRefractory-cohort concentration site
LeedsNHS specialist paediatric epilepsy centreRefractory-cohort concentration site
NewcastleNHS specialist paediatric epilepsy centreRefractory-cohort concentration site
British Paediatric Neurology Association (BPNA) Dravet working groupProfessional clinical body, not a treatment centreShapes NICE evidence review; engaged 18-24 months pre-submission

Sources: NHS England Highly Specialised Services Dravet syndrome commissioning specification; AXLRx UK Dravet Syndrome Launch Readiness assessment (2026); British Paediatric Neurology Association Dravet working group guidance.

Commercial Questions

What this workbook answers

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

01
Which six NHS centres concentrate the UK's refractory Dravet syndrome cohort, and how does that concentration change KOL engagement?

Delivers

  • The six-centre refractory-cohort network (GOSH, Bristol, Alder Hey, Birmingham Children's, Leeds, Newcastle)
  • institutional concentration as a KOL-tiering signal
  • K1 KOL Universe Sizing methodology
02
What role does the BPNA Dravet working group play in shaping NICE evidence review, and how early should it be engaged?

Delivers

  • K2 Tier Classification methodology
  • BPNA working-group participation as an influence signal
  • K3 Scientific Influence scoring inputs
  • the 18-24 month pre-submission engagement window
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 at six NHS centres, not scattergun individual outreach, is the single variable this workbook sizes first
  • Pressure-tested against the refractory-cohort case, 600-900 of 2,000-2,500 UK patients, before the rest of the workbook is built out
2 KOL Universe (K1) 4 pp
  • Every UK Dravet syndrome KOL sized and sourced from publication and institutional-affiliation data
  • The six-centre refractory network (GOSH, Bristol, Alder Hey, Birmingham Children's, Leeds, Newcastle) 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 BPNA Dravet working group participation and refractory-cohort caseload
  • What separates a Tier 1 KOL from a high-volume community prescriber
4 Scientific Influence (K3) 3 pp
  • Influence inputs: BPNA working-group role, refractory-cohort caseload, NICE evidence-review involvement
  • 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 ahead of a NICE submission
6 MSL Territory Coverage (K5) 3 pp
  • Territory-to-KOL coverage map across the six refractory-cohort centres and the wider 25-centre NHS network
  • Where current MSL deployment has gaps
7 Cross-Border Network (K6) 3 pp
  • Multi-market reach for KOLs active beyond the UK, across EU5 and the wider international Dravet research community
  • 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 UK Dravet syndrome.
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.

UK Dravet syndrome KOL sources: NHS England Highly Specialised Services Dravet syndrome commissioning specification, naming Great Ormond Street Hospital, Bristol, Alder Hey, Birmingham Children's Hospital, Leeds, and Newcastle as refractory-cohort concentration centres, and the British Paediatric Neurology Association's Dravet working group guidance.

  • Refractory-cohort centre list and the 600-900 patient estimate verified against the AXLRx UK Dravet Syndrome Launch Readiness assessment and NHS England HSS commissioning specification
  • BPNA Dravet working group's role in NICE evidence review verified against the same source set
  • 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 UK Dravet syndrome 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.

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