Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network

Donal O'Malley; Elisabeth Humbert-Dorfmüller; Joan A Barberà; Aernoud van Batenburg; Elisabeth Bendstrup; Vincent Cottin; Davide Elia; Antoine Froidure; Jan Grutters; Sergio Harari; Fernanda Hernandez-Gonzalez; Maria Kokosi; Thomas Kromann Lund; Effrosyni D Manali; Gergely Meszaros; Geert van Pottelberge; Elzbieta Radzikowska; Jacobo Sellares; Anna Svenningsson; Marcel Veltkamp; Thomas Wagner; Helge Hebestreit; Cormac McCarthy

doi:10.1183/23120541.01010-2025

Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network

Donal O'Malley
, Elisabeth Humbert-Dorfmüller
, Joan A Barberà
, Aernoud van Batenburg
, Elisabeth Bendstrup
, Vincent Cottin
, Davide Elia
, Antoine Froidure
, Jan Grutters
, Sergio Harari
, Fernanda Hernandez-Gonzalez
, Maria Kokosi
, Thomas Kromann Lund
, Effrosyni D Manali
, Gergely Meszaros
, Geert van Pottelberge
, Elzbieta Radzikowska
, Jacobo Sellares
, Anna Svenningsson
, Marcel Veltkamp

Thomas Wagner, Helge Hebestreit, Cormac McCarthy^*

^*Corresponding author for this work

Research output: Contribution to journal › Letter › Academic › peer-review

Abstract

A European LAM Registry would enable standardised data collection, support clinical research and facilitate transnational collaboration, establishing an optimal platform for advancing care and developing a coordinated trial network https://bit.ly/4no2xlr.

Original language	English
Article number	01010-2025
Number of pages	4
Journal	ERJ Open Research
Volume	12
Issue number	2
DOIs	https://doi.org/10.1183/23120541.01010-2025
Publication status	Published - Mar 2026

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10.1183/23120541.01010-2025Licence: CC BY-NC

ERJ Open Res-2026-O'Malley-01010-2025Final published version, 1.11 MBLicence: CC BY-NC

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O'Malley, D., Humbert-Dorfmüller, E., Barberà, J. A., van Batenburg, A., Bendstrup, E., Cottin, V., Elia, D., Froidure, A., Grutters, J., Harari, S., Hernandez-Gonzalez, F., Kokosi, M., Lund, T. K., Manali, E. D., Meszaros, G., van Pottelberge, G., Radzikowska, E., Sellares, J., Svenningsson, A., ... McCarthy, C. (2026). Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network. ERJ Open Research, 12(2), Article 01010-2025. https://doi.org/10.1183/23120541.01010-2025

@article{cff2c469ca2049f28c48d43b24cd6812,

title = "Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network",

abstract = "A European LAM Registry would enable standardised data collection, support clinical research and facilitate transnational collaboration, establishing an optimal platform for advancing care and developing a coordinated trial network https://bit.ly/4no2xlr.",

author = "Donal O'Malley and Elisabeth Humbert-Dorfm{\"u}ller and Barber{\`a}, \{Joan A\} and \{van Batenburg\}, Aernoud and Elisabeth Bendstrup and Vincent Cottin and Davide Elia and Antoine Froidure and Jan Grutters and Sergio Harari and Fernanda Hernandez-Gonzalez and Maria Kokosi and Lund, \{Thomas Kromann\} and Manali, \{Effrosyni D\} and Gergely Meszaros and \{van Pottelberge\}, Geert and Elzbieta Radzikowska and Jacobo Sellares and Anna Svenningsson and Marcel Veltkamp and Thomas Wagner and Helge Hebestreit and Cormac McCarthy",

note = "Copyright {\textcopyright}The authors 2026.",

year = "2026",

month = mar,

doi = "10.1183/23120541.01010-2025",

language = "English",

volume = "12",

journal = "ERJ Open Research",

issn = "2312-0541",

publisher = "European Respiratory Society",

number = "2",

}

O'Malley, D, Humbert-Dorfmüller, E, Barberà, JA, van Batenburg, A, Bendstrup, E, Cottin, V, Elia, D, Froidure, A, Grutters, J, Harari, S, Hernandez-Gonzalez, F, Kokosi, M, Lund, TK, Manali, ED, Meszaros, G, van Pottelberge, G, Radzikowska, E, Sellares, J, Svenningsson, A, Veltkamp, M, Wagner, T, Hebestreit, H & McCarthy, C 2026, 'Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network', ERJ Open Research, vol. 12, no. 2, 01010-2025. https://doi.org/10.1183/23120541.01010-2025

TY - JOUR

T1 - Access to lymphangioleiomyomatosis care across Europe

T2 - an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network

AU - O'Malley, Donal

AU - Humbert-Dorfmüller, Elisabeth

AU - Barberà, Joan A

AU - van Batenburg, Aernoud

AU - Bendstrup, Elisabeth

AU - Cottin, Vincent

AU - Elia, Davide

AU - Froidure, Antoine

AU - Grutters, Jan

AU - Harari, Sergio

AU - Hernandez-Gonzalez, Fernanda

AU - Kokosi, Maria

AU - Lund, Thomas Kromann

AU - Manali, Effrosyni D

AU - Meszaros, Gergely

AU - van Pottelberge, Geert

AU - Radzikowska, Elzbieta

AU - Sellares, Jacobo

AU - Svenningsson, Anna

AU - Veltkamp, Marcel

AU - Wagner, Thomas

AU - Hebestreit, Helge

AU - McCarthy, Cormac

PY - 2026/3

Y1 - 2026/3

N2 - A European LAM Registry would enable standardised data collection, support clinical research and facilitate transnational collaboration, establishing an optimal platform for advancing care and developing a coordinated trial network https://bit.ly/4no2xlr.

AB - A European LAM Registry would enable standardised data collection, support clinical research and facilitate transnational collaboration, establishing an optimal platform for advancing care and developing a coordinated trial network https://bit.ly/4no2xlr.

U2 - 10.1183/23120541.01010-2025

DO - 10.1183/23120541.01010-2025

M3 - Letter

C2 - 41918953

SN - 2312-0541

VL - 12

JO - ERJ Open Research

JF - ERJ Open Research

IS - 2

M1 - 01010-2025

ER -

Access to lymphangioleiomyomatosis care across Europe: an ERN-LUNG survey of clinical practice, and the case for a European registry and trial network

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