Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study

Abstract Introduction The median time to diagnosis of amyotrophic lateral sclerosis (ALS) is approximately 12 months after the onset of first symptoms. This diagnostic delay is primarily due to the nonspecific nature of early symptoms and the clinical challenges in differentiating ALS from its mimic...

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Main Authors: Laura Tzeplaeff, Ana Galhoz, Clara Meijs, Lucas Caldi Gomes, Andrej Kovac, Amrei Menzel, Hatice Değirmenci, Abir Alaamel, Hüseyin Can Kaya, Ali Günalp Çelik, Sine Dinçer, Meltem Korucuk, Sibel Berker Karaüzüm, Elif Bayraktar, Vildan Çiftçi, Uğur Bilge, Filiz Koç, Antonia F. Demleitner, Anne Buchberger, Ricarda von Heynitz, Vincent Gmeiner, Christina Knellwolf, Mohammed Mouzouri, Joanne Wuu, A. Nazli Başak, Peter Munch Andersen, Florian Kohlmayer, Nicholas J. Ashton, Wojciech Kuban, Christof Lenz, Mary-Louise Rogers, Norbert Zilka, Philippe Corcia, Yossef Lerner, Markus Weber, Monika Turcanova Koprusakova, Hilmi Uysal, Michael Benatar, Michael P. Menden, Paul Lingor
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Language:English
Published: BMC 2025-08-01
Series:Neurological Research and Practice
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Online Access:https://doi.org/10.1186/s42466-025-00417-9
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author Laura Tzeplaeff
Ana Galhoz
Clara Meijs
Lucas Caldi Gomes
Andrej Kovac
Amrei Menzel
Hatice Değirmenci
Abir Alaamel
Hüseyin Can Kaya
Ali Günalp Çelik
Sine Dinçer
Meltem Korucuk
Sibel Berker Karaüzüm
Elif Bayraktar
Vildan Çiftçi
Uğur Bilge
Filiz Koç
Antonia F. Demleitner
Anne Buchberger
Ricarda von Heynitz
Vincent Gmeiner
Christina Knellwolf
Mohammed Mouzouri
Joanne Wuu
A. Nazli Başak
Peter Munch Andersen
Florian Kohlmayer
Nicholas J. Ashton
Wojciech Kuban
Christof Lenz
Mary-Louise Rogers
Norbert Zilka
Philippe Corcia
Yossef Lerner
Markus Weber
Monika Turcanova Koprusakova
Hilmi Uysal
Michael Benatar
Michael P. Menden
Paul Lingor
author_facet Laura Tzeplaeff
Ana Galhoz
Clara Meijs
Lucas Caldi Gomes
Andrej Kovac
Amrei Menzel
Hatice Değirmenci
Abir Alaamel
Hüseyin Can Kaya
Ali Günalp Çelik
Sine Dinçer
Meltem Korucuk
Sibel Berker Karaüzüm
Elif Bayraktar
Vildan Çiftçi
Uğur Bilge
Filiz Koç
Antonia F. Demleitner
Anne Buchberger
Ricarda von Heynitz
Vincent Gmeiner
Christina Knellwolf
Mohammed Mouzouri
Joanne Wuu
A. Nazli Başak
Peter Munch Andersen
Florian Kohlmayer
Nicholas J. Ashton
Wojciech Kuban
Christof Lenz
Mary-Louise Rogers
Norbert Zilka
Philippe Corcia
Yossef Lerner
Markus Weber
Monika Turcanova Koprusakova
Hilmi Uysal
Michael Benatar
Michael P. Menden
Paul Lingor
author_sort Laura Tzeplaeff
collection DOAJ
description Abstract Introduction The median time to diagnosis of amyotrophic lateral sclerosis (ALS) is approximately 12 months after the onset of first symptoms. This diagnostic delay is primarily due to the nonspecific nature of early symptoms and the clinical challenges in differentiating ALS from its mimics. Therefore, the discovery of reliable biomarkers for the early and accurate diagnosis of ALS represents a critical medical need. Methods A total of 330 participants will be recruited across six international study sites. The cohort will include (1) pre-symptomatic gene mutation carriers, (2) symptomatic individuals up to 12 months after symptom onset with either ALS, ALS mimics, or a pure motor syndrome with yet unclear assignment, and (3) healthy controls. Participants will engage in a one-year longitudinal study, consisting of an initial evaluation at baseline visit and a follow-up visit 12 months later. Assessments will include an environmental and medical history questionnaire, neurological examinations, olfactory testing, cognitive/behavioral evaluations, and the collection of biological samples (serum, plasma, urine, tear fluid, and cerebrospinal fluid). Proteomic, metabolomic, and lipidomic analyses will be performed using mass spectrometry and targeted immunoassays, with all samples processed under standardized protocols. The resulting multimodal dataset will be systematically integrated in an effort to uncover a presymptomatic and early ALS signature. Perspective The premodiALS study aim to identify a clinico-molecular signature characteristic of presymptomatic and early ALS. These findings may have relevance to early diagnosis and future clinical practice for ALS disease.
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spelling doaj-art-73a2ead2607e4b24b3ef582086bf41bc2025-08-24T12:02:26ZengBMCNeurological Research and Practice2524-34892025-08-01711910.1186/s42466-025-00417-9Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS studyLaura Tzeplaeff0Ana Galhoz1Clara Meijs2Lucas Caldi Gomes3Andrej Kovac4Amrei Menzel5Hatice Değirmenci6Abir Alaamel7Hüseyin Can Kaya8Ali Günalp Çelik9Sine Dinçer10Meltem Korucuk11Sibel Berker Karaüzüm12Elif Bayraktar13Vildan Çiftçi14Uğur Bilge15Filiz Koç16Antonia F. Demleitner17Anne Buchberger18Ricarda von Heynitz19Vincent Gmeiner20Christina Knellwolf21Mohammed Mouzouri22Joanne Wuu23A. Nazli Başak24Peter Munch Andersen25Florian Kohlmayer26Nicholas J. Ashton27Wojciech Kuban28Christof Lenz29Mary-Louise Rogers30Norbert Zilka31Philippe Corcia32Yossef Lerner33Markus Weber34Monika Turcanova Koprusakova35Hilmi Uysal36Michael Benatar37Michael P. Menden38Paul Lingor39Department of Neurology, Rechts Der Isar Hospital of the Technical University MunichDepartment of Computational Health, Helmholtz MunichDepartment of Computational Health, Helmholtz MunichDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichInstitute of Neuroimmunology, Slovak Academy of SciencesBitcare GmbH, Technical University of MunichDepartment of Neurology, Akdeniz University HospitalDepartment of Neurology, Akdeniz University HospitalDepartment of Neurology, Akdeniz University HospitalDepartment of Neurology, Akdeniz University HospitalDepartment of Neurology, Akdeniz University HospitalNeuromuscular Center, Antalya Education and Research HospitalDepartment of Neurology, Akdeniz University HospitalSchool of Medicine, Neurodegeneration Research Laboratory NDAL, Koç University, Research Center for Translational Medicine KUTTAMSchool of Medicine, Neurodegeneration Research Laboratory NDAL, Koç University, Research Center for Translational Medicine KUTTAMDepartment of Neurology, Akdeniz University HospitalNeurology Department, Çukurova UniversityDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichNeuromuscular Diseases Center/ALS Clinic of the Kantonsspital StCentre de Reference SLA Et Autres Maladies du Neurone Moteur, Department of Neurology, CHRU BretonneauDepartment of Neurology and ALS Center, University of Miami Miller School of MedicineSchool of Medicine, Neurodegeneration Research Laboratory NDAL, Koç University, Research Center for Translational Medicine KUTTAMDepartment of Clinical Science, Neurosciences, Umeå UniversityBitcare GmbH, Technical University of MunichDepartment of Psychiatry and Neurochemistry, Sahlgrenska Academy at Gothenburg UniversityDepartment of Pharmacokinetics and Drug Metabolism, Maj Institute of Pharmacology of the Polish Academy of SciencesMax Planck Institute for Biophysical Chemistry, Bioanalytical Mass SpectrometryFlinders Health and Medical Research Institute, College of Medicine and Public Health of the Flinders UniversityInstitute of Neuroimmunology, Slovak Academy of SciencesCentre de Reference SLA Et Autres Maladies du Neurone Moteur, Department of Neurology, CHRU BretonneauDepartment of Neurology, Hadassah University Hospital-Ein KeremNeuromuscular Diseases Center/ALS Clinic of the Kantonsspital StDepartment of Neurology, University Hospital MartinDepartment of Neurology, Akdeniz University HospitalDepartment of Neurology and ALS Center, University of Miami Miller School of MedicineDepartment of Computational Health, Helmholtz MunichDepartment of Neurology, Rechts Der Isar Hospital of the Technical University MunichAbstract Introduction The median time to diagnosis of amyotrophic lateral sclerosis (ALS) is approximately 12 months after the onset of first symptoms. This diagnostic delay is primarily due to the nonspecific nature of early symptoms and the clinical challenges in differentiating ALS from its mimics. Therefore, the discovery of reliable biomarkers for the early and accurate diagnosis of ALS represents a critical medical need. Methods A total of 330 participants will be recruited across six international study sites. The cohort will include (1) pre-symptomatic gene mutation carriers, (2) symptomatic individuals up to 12 months after symptom onset with either ALS, ALS mimics, or a pure motor syndrome with yet unclear assignment, and (3) healthy controls. Participants will engage in a one-year longitudinal study, consisting of an initial evaluation at baseline visit and a follow-up visit 12 months later. Assessments will include an environmental and medical history questionnaire, neurological examinations, olfactory testing, cognitive/behavioral evaluations, and the collection of biological samples (serum, plasma, urine, tear fluid, and cerebrospinal fluid). Proteomic, metabolomic, and lipidomic analyses will be performed using mass spectrometry and targeted immunoassays, with all samples processed under standardized protocols. The resulting multimodal dataset will be systematically integrated in an effort to uncover a presymptomatic and early ALS signature. Perspective The premodiALS study aim to identify a clinico-molecular signature characteristic of presymptomatic and early ALS. These findings may have relevance to early diagnosis and future clinical practice for ALS disease.https://doi.org/10.1186/s42466-025-00417-9Motoneuron diseasePre-symptomaticMulti-omicBiomarkersEarly diagnosisObservational study
spellingShingle Laura Tzeplaeff
Ana Galhoz
Clara Meijs
Lucas Caldi Gomes
Andrej Kovac
Amrei Menzel
Hatice Değirmenci
Abir Alaamel
Hüseyin Can Kaya
Ali Günalp Çelik
Sine Dinçer
Meltem Korucuk
Sibel Berker Karaüzüm
Elif Bayraktar
Vildan Çiftçi
Uğur Bilge
Filiz Koç
Antonia F. Demleitner
Anne Buchberger
Ricarda von Heynitz
Vincent Gmeiner
Christina Knellwolf
Mohammed Mouzouri
Joanne Wuu
A. Nazli Başak
Peter Munch Andersen
Florian Kohlmayer
Nicholas J. Ashton
Wojciech Kuban
Christof Lenz
Mary-Louise Rogers
Norbert Zilka
Philippe Corcia
Yossef Lerner
Markus Weber
Monika Turcanova Koprusakova
Hilmi Uysal
Michael Benatar
Michael P. Menden
Paul Lingor
Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
Neurological Research and Practice
Motoneuron disease
Pre-symptomatic
Multi-omic
Biomarkers
Early diagnosis
Observational study
title Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
title_full Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
title_fullStr Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
title_full_unstemmed Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
title_short Identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis (ALS): protocol of the premodiALS study
title_sort identification of a presymptomatic and early disease signature for amyotrophic lateral sclerosis als protocol of the premodials study
topic Motoneuron disease
Pre-symptomatic
Multi-omic
Biomarkers
Early diagnosis
Observational study
url https://doi.org/10.1186/s42466-025-00417-9
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