Evidence map›Paper›PMID 42315356›Full record

ArticleBMJ open2026

Strategic Amyotrophic Lateral Sclerosis Australia-Systems Genomics Consortium (SALSA-SGC): cohort profile.

Anjali K Henders, Laura Ziser, Fleur C Garton, Lorel Adams, Karalyn Ernst, Sarah Furlong, Judith Anne Heads, Susan Heggie, Ruth Krasniqi, Madhura Bhadravathi Lokeshappa and 32 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

42 authors.

Anjali K HendersInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.ORCID http://orcid.org/0000-0003-3672-1451
Laura ZiserInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Fleur C GartonInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.ORCID http://orcid.org/0000-0002-1490-5930
Lorel AdamsMotor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
Karalyn ErnstDepartment of Neurology, Flinders Medical Centre, Bedford Park, South Australia, Australia.
Sarah FurlongMotor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
Judith Anne HeadsMotor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
Susan HeggieDepartment of Neurology, Royal Brisbane and Women's Hospital, Herston, Queensland, Australia.
Ruth KrasniqiNeurology, Calvary Health Care Bethlehem, Caulfield South, Victoria, Australia.
Madhura Bhadravathi LokeshappaInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Srestha Mazumder, Neuroscience Research Australia, Randwick, New South Wales, Australia.
Elyshia McNamaraHarry Perkins Institute of Medical Research, Perth, Western Australia, Australia.
Amanda MacShaneHarry Perkins Institute of Medical Research, Perth, Western Australia, Australia.
Linda MekhaelAustralia Brain and Nerve Research Center, Concord Hospital, Sydney, New South Wales, Australia.
Lorelle NunnInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Bronwen OrdenAustralia Brain and Nerve Research Center, Concord Hospital, Sydney, New South Wales, Australia.
Julie RyderAustralia Brain and Nerve Research Center, Concord Hospital, Sydney, New South Wales, Australia.
Kathryn ThorpeDepartment of Neurology, Royal Brisbane and Women's Hospital, Herston, Queensland, Australia.
Marie ToubiaDepartment of Neurology, Flinders Medical Centre, Bedford Park, South Australia, Australia.
Leanne M WallaceInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Dina WickremeratneAustralian Institute for Bioengineering and Nanotechnology, The University of Queensland, Brisbane, Queensland, Australia.
Emma WindebankNeurology, Calvary Health Care Bethlehem, Caulfield South, Victoria, Australia.
Beben BenyaminAustralian Centre for Precision Health, University of South Australia, Adelaide, South Australia, Australia.
Shyuan NgoAustralian Institute for Bioengineering and Nanotechnology, The University of Queensland, Brisbane, Queensland, Australia.
Garth NicholsonAustralia Brain and Nerve Research Center, Concord Hospital, Sydney, New South Wales, Australia.
Roger PamphlettSydney Medical School, The University of Sydney, New South Wales, Sydney, New South Wales, Australia.ORCID http://orcid.org/0000-0003-3326-7273
Frederik J SteynSchool of Biomedical Sciences, The University of Queensland, Saint Lucia, Queensland, Australia.
Peter M VisscherInstitute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Kelly L WillamsMotor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
Robert HendersonDepartment of Neurology, Royal Brisbane and Women's Hospital, Herston, Queensland, Australia.
Matthew C Kiernan, Neuroscience Research Australia, Randwick, New South Wales, Australia.
Nigel LaingHarry Perkins Institute of Medical Research, Perth, Western Australia, Australia.
Susan MathersNeurology, Calvary Health Care Bethlehem, Caulfield South, Victoria, Australia.
Pamela A McCombeUniversity Of Queensland Centre For Clinical Research, Herston, Queensland, Australia.
Merrilee NeedhamDepartment of Neurology, Fiona Stanley Hospital, Perth, Western Australia, Australia.
Dominic RoweMotor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
David SchultzDepartment of Neurology, Flinders Medical Centre, Bedford Park, South Australia, Australia.
Paul TalmanUniversity Hospital, Deakin University Faculty of Science and Technology, Geelong, Victoria, Australia.
Steve VucicAustralia Brain and Nerve Research Center, Concord Hospital, Sydney, New South Wales, Australia.ORCID http://orcid.org/0000-0002-8323-873X
Ian P Blair *Motor Neuron Disease Research Centre, Macquarie University, Sydney, New South Wales, Australia.
Allan F McRae *Institute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia.
Naomi R Wray *Institute for Molecular Bioscience, The University of Queensland, Brisbane, Queensland, Australia naomi.wray@uq.edu.au.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeAmyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative motor neuron disease (MND) with heterogeneity in disease onset, progression and treatment response. The Strategic ALS Australia-Systems Genomics Consortium (SALSA-SGC) was established in recognition of the need for large data sets of clinical data matched with biological samples to enable and foster ALS research and better understanding of aetiology and biological mechanisms. SALSA-SGC brought together the major Australian MND clinics to set up sustainable infrastructure that could facilitate long-term human ALS research and clinical trials nationally and internationally.

participantsBetween April 2016 and December 2024, SALSA-SGC recruited 1813 participants, including 1386 ALS/MND cases, 388 controls and 39 others (asymptomatic relatives and ALS mimics). Clinical data and biospecimens are available for 1333 and 1189 ALS cases, respectively, with longitudinal data spanning 4442 total clinic visits and 3201 samples. An open-access online data explorer showcases collected datasets. FINDINGS TO DATE: Detailed clinical and questionnaire data allow an in-depth description of the cohort, informing clinical and health policy research. Screening for known ALS large-effect risk variants identified 125 mutation carriers (11.5% from N=1059), including 70 with C9orf72 expansions. Single Nucleotide Polymorphism (SNP)-array data (N=1088 cases; N=244 controls) have supported multiple published studies. SALSA-SGC resources are actively used by national and international researchers. FUTURE PLANS: Ongoing efforts aim to expand recruitment into regional Australia and enhance sample processing for cell-based studies. The SALSA-SGC resource is accessible by researchers under agreements governed by participant consent, human ethics committee guidelines and agreed use of data and samples.

Indexed as

Amyotrophic Lateral SclerosisGenomicsAdultAgedAustraliaC9orf72 ProteinCohort StudiesFemaleHumansMaleMiddle AgedPolymorphism, Single NucleotideC9orf72 ProteinC9orf72 protein, humanGENETICSLongitudinal studiesMotor neurone disease

Identifiers

PMID42315356
PMCPMC13288974

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.