Celebrating 10 years of ALSrisc
This year marks the 10th anniversary of the ALSrisc project, and we would like to take this opportunity to thank the people living with ALS and their families for their invaluable contribution.
10 years of ALSrisc
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Whether our participants live with ALS/MND or have taken part as a family member, their participation has made a real difference in advancing our understanding of this disease.
When ALSrisc began in 2015, our goal was to gather detailed information about lifestyle, medical history, and genetics to uncover factors that may influence the risk and progression of ALS/MND. Thanks to the dedication of hundreds of participants, we have built one of the most comprehensive ALS/MND research resources in the Nordic region.
Over the past decade, ALSrisc data have supported a wide range of scientific studies — from genetics to lifestyle and environmental factors. These efforts have resulted in several publications and doctoral thesis, helping researchers worldwide move closer to understanding and, one day, preventing ALS/MND.
Scientific publications using ALSrisc data
Below you can find an overview of the main scientific articles that used data from ALSrisc, along with a short summary of their key findings.
| Year | Reference | Key findings |
|---|---|---|
| 2018 | Longinetti, E., Regodón Wallin, A., Samuelsson, K., Press, R., Zachau, A., Ronnevi, L. O., … Ingre, C. (2018). The Swedish motor neuron disease quality registry. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19(7–8), 528–537. https://doi.org/10.1080/21678421.2018.1497065 | With this study, we learned that the main strengths of the MND Quality Registry are its clinical, quantitative, qualitative, and prospective nature, providing the researchers potential means of identifying appropriate candidates for clinical trials and other research projects, as well as assuring to the patients an effective and adequate time spent on-site with the healthcare professionals. |
| 2020 | Ingre C, Chen L, Zhan Y, Termorshuizen J, Yin L, Fang F. Lipids, apolipoproteins, and prognosis of amyotrophic lateral sclerosis. Neurology. 2020 Apr 28;94(17):e1835-e1844. doi: 10.1212/WNL.0000000000009322. Epub 2020 Mar 27. PMID: 32221024; PMCID: PMC7274849. | With this study we learned that lipids and apolipoproteins are important prognostic indicators for amyotrophic lateral sclerosis and should be monitored at the diagnosis of amyotrophic lateral sclerosis. |
| 2022 | Yazdani S, Seitz C, Cui C, Lovik A, Pan L, Piehl F, Pawitan Y, Kläppe U, Press R, Samuelsson K, Yin L, Vu TN, Joly AL, Westerberg LS, Evertsson B, Ingre C, Andersson J, Fang F. T cell responses at diagnosis of amyotrophic lateral sclerosis predict disease progression. Nat Commun. 2022 Nov 8;13(1):6733. doi: 10.1038/s41467-022-34526-9. PMID: 36347843; PMCID: PMC9643478. | With this study, we learned that T cell responses associate with and likely contribute to disease progression in ALS, supporting modulation of adaptive immunity as a viable therapeutic option. |
| 10.1038/s41467-022-34526-9. PMID: 36347843; PMCID: PMC9643478. | ||
| Kläppe U, Chamoun S, Shen Q, Finn A, Evertsson B, Zetterberg H, Blennow K, Press R, Samuelsson K, Månberg A, Fang F, Ingre C. Cardiac troponin T is elevated and increases longitudinally in ALS patients. Amyotroph Lateral Scler Frontotemporal Degener. 2022 Feb;23(1-2):58-65. doi: 10.1080/21678421.2021.1939384. Epub 2021 Jun 21. PMID: 34151677. | In this study, we showed that Troponin T, a protein normally used to detect heart disease, was elevated in patients with ALS. Troponin T was better at flagging spinal-onset cases and also increased as the disease progressed. | |
| Sennfält, S., Kläppe, U., Thams, S., Samuelsson, K., Press, R., Fang, F., & Ingre, C. (2022). Dying from ALS in Sweden: clinical status, setting, and symptoms. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24(3–4), 237–245. https://doi.org/10.1080/21678421.2022.2096411 | Thanks to this study, we learned that ehe majority of patients died in their own homes or at a palliative unit in the presence of next of kin and most symptoms were adequately managed. This paper might be used in educating patients, next of kin as well as health professionals, decreasing uncertainty surrounding the end of life. | |
| Cui C, Ingre C, Yin L, Li X, Andersson J, Seitz C, Ruffin N, Pawitan Y, Piehl F, Fang F. Correlation between leukocyte phenotypes and prognosis of amyotrophic lateral sclerosis. Elife. 2022 Mar 15;11:e74065. doi: 10.7554/eLife.74065. PMID: 35287794; PMCID: PMC8923665. | Our findings suggest a dual role of immune cells in ALS prognosis, where neutrophils and monocytes primarily reflect functional status whereas NK cells and different T lymphocyte populations act as prognostic markers for survival. | |
| 2023 | Sennfält S, Kläppe U, Thams S, Samuelsson K, Press R, Fang F, Ingre C. The path to diagnosis in ALS: delay, referrals, alternate diagnoses, and clinical progression. Amyotroph Lateral Scler Frontotemporal Degener. 2023 Feb;24(1-2):45-53. doi: 10.1080/21678421.2022.2053722. Epub 2022 Mar 27. PMID: 35343340." | With this study, we learned that there was great variation in the path to the ALS diagnosis based on the region of onset of the disease. In all groups, the diagnostic delay and clinical progression was substantial. We identified subgroups where the delay was the longest and might be reduced. |
| Kläppe, U., Sennfält, S., Lovik, A., Finn, A., Bofaisal, U., Zetterberg, H., … Ingre, C. (2023). Neurodegenerative biomarkers outperform neuroinflammatory biomarkers in amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25(1–2), 150–161. https://doi.org/10.1080/21678421.2023.2263874 | Biomarkers of neuroaxonal degeneration displayed better diagnostic and prognostic value compared with neuroinflammatory biomarkers. However, in contrast to patients with a spinal ALS onset, neurofilaments and the biomarker CHIT1 performed worse at predicting survival and seemed to increase over time in patients with a bulbar ALS onset. | |
| Foucher, J., Winroth, I., Lovik, A., Sennfält, S., Pereira, J. B., Fang, F., … Ingre, C. (2023). Validity and reliability measures of the Swedish Karolinska version of the Edinburgh Cognitive and Behavioral ALS Screen (SK-ECAS). Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 24(7–8), 713–718. https://doi.org/10.1080/21678421.2023.2239857 | This study confirmed that the Swedish version of the ECAS, a screening neuropsychological test, is reliable and valid to use in the Swedish ALS population. | |
| 2024 | Öijerstedt L, Foucher J, Lovik A, Yazdani S, Juto A, Kläppe U, Fang F, Ingre C. Repeated cognitive assessments show stable function over time in patients with ALS. J Neurol. 2024 Aug;271(8):5267-5274. doi: 10.1007/s00415-024-12479-x. Epub 2024 Jun 9. Erratum in: J Neurol. 2025 Jan 8;272(1):104. doi: 10.1007/s00415-024-12833-z. PMID: 38853167; PMCID: PMC11319384. | This study allowed us to confirm that the impairment in the way some people with ALS process information was associated with a faster decline in motor functions and survival. We also observed that the way people living with ALS process information is stable over the course of the disease, regardless of an impairment being present at diagnosis or not. |
| Kläppe U, Sennfält S, Lovik A, Finn A, Bofaisal U, Zetterberg H, Blennow K, Piehl F, Kmezic I, Press R, Samuelsson K, Månberg A, Fang F, Ingre C. Neurodegenerative biomarkers outperform neuroinflammatory biomarkers in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2024 Feb;25(1-2):150-161. doi: 10.1080/21678421.2023.2263874. Epub 2024 Jan 23. PMID: 37789557. | Here, we showed that nerve-fiber fragments in blood and spinal fluid (neurofilaments) beat two inflammation markers (CHIT1 and MCP-1) at detecting ALS and forecasting its pace. Over time, neurofilaments and CHIT1 increased among bulbar onset patients, and remained stable or decreased among spinal onset patients. | |
| Imrell, S., Fang, F., Ingre, C. et al. Increased incidence of motor neuron disease in Sweden: a population-based study during 2002–2021. J Neurol 271, 2730–2735 (2024). https://doi.org/10.1007/s00415-024-12219-1 | The incidence rate of MND in Sweden now seems to have surpassed 4 cases per 100,000 person-years. This is higher when compared to both other European countries and previous Swedish studies. It remains to be determined if this increase reflects an actual increasing incidence of MND in Sweden or is due to other factors such as better registry coverage. | |
| Foucher J, Öijerstedt L, Lovik A, Sun J, Ismail MA, Sennfält S, Savitcheva I, Estenberg U, Pagani M, Fang F, Pereira JB, Ingre C. ECAS correlation with metabolic alterations on FDG-PET imaging in ALS. Amyotroph Lateral Scler Frontotemporal Degener. 2024 Nov;25(7-8):708-716. doi: 10.1080/21678421.2024.2361695. Epub 2024 Jun 5. PMID: 38836336. | Through this study, we learned that the metabolic patterns in [18F]FDG -PET (the pattern showing how the brain is consumming sugar) show that changes in the glucose metabolism of corresponding areas are related to cognitive dysfunction in ALS, and can be detected using the ECAS (a screening neuropsychological test). | |
| Chourpiliadis C, Seitz C, Lovik A, Joyce EE, Pan L, Hu Y, Kläppe U, Samuelsson K, Press R, Ingre C, Fang F. Lifestyle and medical conditions in relation to ALS risk and progression-an introduction to the Swedish ALSrisc Study. J Neurol. 2024 Aug;271(8):5447-5459. doi: 10.1007/s00415-024-12496-w. | This study showed that among the ALSrisc participants higher BMI and diabetes were associated with lower risk of ALS. Higher BMI was associated with lower risk of death, whereas smoking (especially in high pack-years), hypercholesterolemia, and hypertension were associated with higher risk of death after ALS diagnosis. | |
| 2025 | Chamoun, S., Imrell, S., Upate, Z., Kläppe, U., Öijerstedt, L., Yazdani, S., Andersson Franko, M., Foucher, J., Azizi, L., Lovik, A., Samuelsson, K., Press, R., Fang, F., Svennberg, E., Juto, A., Ingre, C. Plasma troponin T reflects lower motor neuron involvement on electromyography in amyotrophic lateral sclerosis. Brain Commun. 2025 May 6;7(3):fcaf177. doi: 10.1093/braincomms/fcaf177. Epub 2025 May 6. PMID: 40385376; PMCID: PMC12082033. | This study found that cardiac Troponin T levels are elevated in patients with ALS and closely reflect peripheral involvement seen on neurophysiological examinations. The results suggest that hs-cTnT may serve as a biomarker of peripheral involvement, supporting its potential role in clinical monitoring and future treatment trials. |
| Psychogios, I., Hu, Y., Seitz, C. et al. Exploring clinical chemistry markers in amyotrophic lateral sclerosis: insights into survival and disease trajectories. J Neurol 272, 7 (2025). https://doi.org/10.1007/s00415-024-12774-7 | In this study we learned that simple, routine blood tests at ALS diagnosis can help predict how fast the disease will progress, with some markers (like LDL cholesterol and albumin) linked to better survival and others (like NfL and certain red-blood-cell measures) linked to worse outcomes. |
PhD theses based on ALSrisc
We are also proud that ALSrisc has supported several PhD projects, helping train the next generation of ALS researchers. Below you will find a list of the doctoral thesis that used data from the ALSrisc project.
| Researcher | Year | Title of thesis | Reference |
|---|---|---|---|
| Can Cui | 2021 | Immunity and inflammation in amyotrophic lateral sclerosis : an epidemiological approach | https://hdl.handle.net/10616/47790 |
| Ulf Kläppe | 2023 | Biomarkers and psychological stress in amyotrophic lateral sclerosis | https://hdl.handle.net/10616/48546 |
| Solmaz Yazdani | 2023 | T cell responses in amyotrophic lateral sclerosis : friends or foes? | https://hdl.handle.net/10616/48713 |
| Juliette Foucher | 2025 | From cognitive and behavioral impairment to clinical trial inclusion, for an inclusive approach of Amyotrophic Lateral Sclerosis | https://doi.org/10.69622/27960135.v1 |
| Yihan Hu | 2025 | Infections in the risk and prognosis of multiple sclerosis and amyotrophic lateral sclerosis | https://doi.org/10.69622/29278304.v1 |
| Charilaos Chourpiliadis | Planned in 2026 | A novel evaluation of potential risk and prognostic factors for amyotrophic lateral sclerosis | |
| Sanharib Chamoun | Planned in 2026 | Title to be determined | |
| Emily Joyce | Planned in 2026 | Title to be determined |
As we look into the next decade, ALSrisc remains committed to careful stewardship of its data and to keeping participants informed of the progress their involvement makes possible. We will continue to share updates on our web-page regarding new discoveries, collaborations, and opportunities to contribute.
With warm regards,
Jenny Hellqvist, ALSrisc coordinator,
Professor Caroline Ingre and Professor Fang Fang, Karolinska Institutet.