Isolated central nervous system disease in Familial Hemophagocytic Lymphohistiocytosis (FHL) – a case series

Isolated central nervous system disease in Familial Hemophagocytic Lymphohistiocytosis (FHL) – a case series - isolated CNS-HLH

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00013196

Enrollment

Registered

2019-12-09

Start date

2019-06-15

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

D76.1

Interventions

Group 1: Case description: Isolated central nervous system disease in Familial Hemophagocytic Lymphohistiocytosis. Data is collected retrospectively from patient records, transfered to the study data

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. initial clinical presentation with neurological symptoms; 2. absence of cytopenia and splenomegaly at initial presentation; 3. occurrence of systemic HLH features no earlier than 3 months after neurological presentation; 4. genetic diagnosis of familial Hemophagocytic Lymphohistiocytosis

Exclusion criteria

Exclusion criteria: no

Design outcomes

Primary

Measure	Time frame
survival	—

Secondary

Measure	Time frame
degree of neurological impairment	—

Countries

Germany

Contacts

Public ContactStephan Ehl

Universitätsklinikum Freiburg Centrum für Chronische Immundefizienz (CCI) im Zentrum für Translationale Zellforschung

stephan.ehl@uniklinik-freiburg.de+49 761 270 77300

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026