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Draft:Answer ALS

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  • Comment: Well done on creating the draft, and it may potentially meet the relevant requirements (including WP:GNG, WP:NCORP) but presently it is not clear that it does.
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Answer ALS is a United States based research consortium and nonprofit focused on amyotrophic lateral sclerosis (ALS). It has enrolled more than 1,500 participants and created a resource that links longitudinal clinical data with multi-omics from induced pluripotent stem cell (iPSC) derived motor neurons. Data and matched biospecimens are made available to researchers through the Neuromine Data Portal and an iPSC repository operated with Cedars-Sinai.[1][2][3][4]

History

[edit]

Answer ALS grew out of the Team Gleason ALS Summit held in 2013, organized by former NFL player and New Orlean Saint Steve Gleason and his foundation, which convened researchers, clinicians, and advocates to draft a coordinated research plan.[5][6] At the time, Answer ALS was described as a multi-year, 20-million-dollar research project involving Johns Hopkins, Cedars-Sinai, Massachusetts General Hospital and other centers.[7] Gleason publicly announced the “Answer ALS” initiative in June 2014, calling it “the single largest effort to end ALS in the history of the disease.”[8] The nonprofit Answer ALS Foundation received U.S. tax-exempt status in 2015 and is headquartered in New Orleans, Louisiana.[9]

Enrollments and data collection were coordinated across eight U.S. ALS clinics beginning in 2016. The design of the cohort, longitudinal measures and multi-omics paired with patient-derived neurons were outlined in a 2022 Nature Neuroscience resource paper.[10] The enrolling clinics listed in the Nature Neuroscience paper are Johns Hopkins University; Massachusetts General Hospital, Healey & AMG Center for ALS; Ohio State University Wexner Medical Center; Emory University; Washington University in St. Louis; Northwestern University, Les Turner ALS Center; Cedars-Sinai Medical Center; and Texas Neurology in Dallas.[10]

In November 2018, Microsoft announced a one million dollar contribution and Azure cloud support.[11] In November 2024, Answer ALS and Cedars-Sinai reported public availability of a large patient-based ALS iPSC and biodata repository, with access via the Cedars-Sinai Biomanufacturing Center and the Neuromine portal.[12][13][14][15]

Program and data resources

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The core Answer ALS cohort combines longitudinal in-clinic assessments with iPSC derived spinal motor neurons generated from participant blood cells. The associated multi-omics include whole-genome sequencing, RNA sequencing, proteomics, and epigenomics such as ATAC-seq, linked to matched biofluids and cell lines available to outside laboratories.[10]

Neuromine data portal

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Answer ALS operates Neuromine, a data portal that provides controlled access to de-identified clinical data and multi-omics, with tools for cohort definition and visualization.[16] In March 2024, ALS Therapy Development Institute announced a data sharing collaboration to incorporate ALS TDI datasets into Neuromine.[17]

iPSC and motor-neuron repository

[edit]

In late 2024, Answer ALS and Cedars-Sinai announced public availability of a patient-based iPSC and ALS biodata repository, with access through the Cedars-Sinai Biomanufacturing Center and Neuromine.[12][13][14][15]

Research use and publications

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Large-scale differentiation and characterization of iPSC derived spinal motor neurons from ALS and control donors were reported in Neuron, 19 Apr 2023.[18] Chromatin accessibility in more than 500 iPSC derived motor neuron lines and prediction of clinical progression rates were reported in Nature Communications, 2 May 2024[19]. MIT News summarized the epigenomic analysis and implications on 2 May 2024.[20]

Champion Insights

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In August 2025, Answer ALS, ALS Therapy Development Institute, and Augie’s Quest announced Champion Insights, a remote participation study intended to investigate why athletes, military service members, and other high-performing groups show elevated incidences of ALS, with data planned for open sharing through the Neuromine Data Portal.[21][22][23] The combined dataset and cell bank is one of the largest resources for ALS research, with over 1,800 iPSC lines distributed to more than 130 institutions worldwide.[24]

Governance and people

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Jeffrey D. Rothstein is co-founder and executive director of the research program in institutional profiles and reporting.[25][26] Clare Durrett serves as Managing Director.[12][27][28]

Funding and support

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Answer ALS is a 501(c)(3) organization with tax-exempt status since 2015.[9]

See also

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Amyotrophic lateral sclerosis

Induced pluripotent stem cell

open science

References

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  1. ^ Baxi, Emily G.; Thompson, Terri; Li, Jonathan; Kaye, Julia A.; Lim, Ryan G.; Wu, Jie; Ramamoorthy, Divya; Lima, Leandro; Vaibhav, Vineet; Matlock, Andrea; Frank, Aaron; Coyne, Alyssa N.; Landin, Barry; Ornelas, Loren; Mosmiller, Elizabeth (February 2022). "Answer ALS, a large-scale resource for sporadic and familial ALS combining clinical and multi-omics data from induced pluripotent cell lines". Nature Neuroscience. 25 (2): 226–237. doi:10.1038/s41593-021-01006-0. ISSN 1546-1726.
  2. ^ "Scientists Create Vast Data Resource to Uncover ALS Subtypes". Scientists Create Vast Data Resource to Uncover ALS Subtypes. Retrieved 2025-12-01.
  3. ^ Biobanking.com (2024-12-05). "World's Largest ALS iPSC Biorepository Opens New Frontiers in Disease Research and Drug Discovery". Biobanking.com. Retrieved 2025-12-01.
  4. ^ "ALS Research Resources | The ALS Association". www.als.org. Retrieved 2025-12-01.
  5. ^ "Gleason-helped initiative aids $20M ALS project". ESPN.com. 2015-09-10. Retrieved 2025-08-28.
  6. ^ Biobanking.com (2024-12-05). "World's Largest ALS iPSC Biorepository Opens New Frontiers in Disease Research and Drug Discovery". Biobanking.com. Retrieved 2025-12-01.
  7. ^ "Gleason-helped initiative aids $20M ALS project". ESPN.com. 2015-09-10. Retrieved 2025-12-01.
  8. ^ "Gleason announces bold plan to end ALS". ESPN.com. 2014-06-27. Retrieved 2025-08-28.
  9. ^ a b Roberts, Andrea Suozzo, Alec Glassford, Ash Ngu, Brandon (2013-05-09). "Answer Als - Nonprofit Explorer". ProPublica. Retrieved 2025-08-28.{{cite web}}: CS1 maint: multiple names: authors list (link)
  10. ^ a b c Baxi, Emily G.; Thompson, Terri; Li, Jonathan; Kaye, Julia A.; Lim, Ryan G.; Wu, Jie; Ramamoorthy, Divya; Lima, Leandro; Vaibhav, Vineet; Matlock, Andrea; Frank, Aaron; Coyne, Alyssa N.; Landin, Barry; Ornelas, Loren; Mosmiller, Elizabeth (February 2022). "Answer ALS, a large-scale resource for sporadic and familial ALS combining clinical and multi-omics data from induced pluripotent cell lines". Nature Neuroscience. 25 (2): 226–237. doi:10.1038/s41593-021-01006-0. ISSN 1546-1726. PMC 8825283. PMID 35115730.
  11. ^ Schmitt, Kellie (2018-11-08). "Microsoft teams with Answer ALS, makes $1M donation to ambitious big data project". GeekWire. Retrieved 2025-08-28.
  12. ^ a b c PhD, Lindsey Shapiro (2024-11-20). "Largest ALS patient-based stem cell, biodata resource now open". Retrieved 2025-08-28.
  13. ^ a b Coulson, Annie (2024-11-27). "ALS research accelerated with new iPSC repository". Neuro Central. Retrieved 2025-08-28.
  14. ^ a b Giboney, Megan (2024-11-22). "ALS research accelerated with new iPSC repository". RegMedNet. Retrieved 2025-08-28.
  15. ^ a b "Answer ALS, Cedars-Sinai Collaboration, Single-Cell Protein Profiling, ChapsVision Acquires Sinequa, More". Pubs - Bio-IT World. Retrieved 2025-08-28.
  16. ^ "ALS Research Resources | The ALS Association". www.als.org. Retrieved 2025-08-28.
  17. ^ "ALS Therapy Development Institute, Answer ALS, and Microsoft Announce Groundbreaking Data Sharing Collaboration". ALS Therapy Development Institute. Retrieved 2025-08-28.
  18. ^ Workman, Michael J.; Lim, Ryan G.; Wu, Jie; Frank, Aaron; Ornelas, Loren; Panther, Lindsay; Galvez, Erick; Perez, Daniel; Meepe, Imara; Lei, Susan; Valencia, Viviana; Gomez, Emilda; Liu, Chunyan; Moran, Ruby; Pinedo, Louis (2023-04-19). "Large-scale differentiation of iPSC-derived motor neurons from ALS and control subjects". Neuron. 111 (8): 1191–1204.e5. doi:10.1016/j.neuron.2023.01.010. ISSN 1097-4199. PMC 10557526. PMID 36764301.
  19. ^ Tsitkov, Stanislav; Valentine, Kelsey; Kozareva, Velina; Donde, Aneesh; Frank, Aaron; Lei, Susan; E. Van Eyk, Jennifer; Finkbeiner, Steve; Rothstein, Jeffrey D.; Thompson, Leslie M.; Sareen, Dhruv; Svendsen, Clive N.; Fraenkel, Ernest (2024-05-02). "Disease related changes in ATAC-seq of iPSC-derived motor neuron lines from ALS patients and controls". Nature Communications. 15 (1): 3606. Bibcode:2024NatCo..15.3606T. doi:10.1038/s41467-024-47758-8. ISSN 2041-1723. PMC 11066062. PMID 38697975.
  20. ^ "Epigenomic analysis sheds light on risk factors for ALS". MIT News | Massachusetts Institute of Technology. 2024-05-02. Retrieved 2025-08-28.
  21. ^ ALS, Answer (2025-08-13). "Leading organizations announce research initiative to uncover why ALS affects high-performing populations". News-Medical. Retrieved 2025-08-28.
  22. ^ Staff, A. T. N. (2025-08-13). "ALS Advocacy Groups Launch 'Champion Insights' To Study High ALS Risk Among Athletes & Military Members". Athletech News. Retrieved 2025-08-28.
  23. ^ "United for Answers: Leading ALS Organizations Announce 'Champion Insights' to Unlock Why Athletes and Military Members Face Higher ALS Risk". ALS Therapy Development Institute. Retrieved 2025-08-28.
  24. ^ Biobanking.com (2024-12-05). "World's Largest ALS iPSC Biorepository Opens New Frontiers in Disease Research and Drug Discovery". Biobanking.com. Retrieved 2025-12-01.
  25. ^ "Jeffrey D. Rothstein MD, PhD". Answer ALS. Retrieved 2025-08-28.
  26. ^ "Two Johns Hopkins Faculty Members Elected to National Academy of Medicine". www.hopkinsmedicine.org. Archived from the original on 2025-04-20. Retrieved 2025-08-28.
  27. ^ Biobanking.com (2024-12-05). "World's Largest ALS iPSC Biorepository Opens New Frontiers in Disease Research and Drug Discovery". Biobanking.com. Retrieved 2025-08-28.
  28. ^ PhD, Lila Levinson (2025-07-27). "Collaboration looks to AI to advance ALS drug discovery". Retrieved 2025-08-28.
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