The Swedish motor neuron disease quality registry

Longinetti, Elisa; Wallin, Amanda Regodón; Samuelsson, Kristin; Press, Rayomand; Zachau, Anne; Ronnevi, Lars‐Olof; Kierkegaard, Marie; Andersen, Peter M.; Hillert, Jan; Fang, Fang; Ingre, Caroline

doi:10.1080/21678421.2018.1497065

Cited by 68 publications

(79 citation statements)

References 46 publications

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“…A diagnosis of ALS based on the hospital discharge records of the Swedish National Patient Register has been shown to have a high positive predictive value and a diagnostic delay of around 1 year. 12 The diagnosis of PD based on inpatient care records of this register has on the other hand a slightly lower positive predictive value and a longer diagnostic delay. 13 The validity of PD diagnosis and the delay of ascertainment should however have improved substantially after 2001, when the vast majority of the patients were identified first through outpatient specialist care.…”

Section: Discussionmentioning

confidence: 94%

“…There are also limitations in the study, including the lack of possibility to clinically verify all diagnoses for ALS and PD, the likely delayed ascertainment of ALS and PD diagnoses using in‐ and out‐patient hospital discharge records, and the possibility for residual confounding. A diagnosis of ALS based on the hospital discharge records of the Swedish National Patient Register has been shown to have a high positive predictive value and a diagnostic delay of around 1 year . The diagnosis of PD based on inpatient care records of this register has on the other hand a slightly lower positive predictive value and a longer diagnostic delay .…”

Section: Discussionmentioning

confidence: 96%

Section: Methodsmentioning

confidence: 98%

“…Based on previous validation studies, the positive predictive value of register‐based definitions is likely high for ALS (91% for any diagnosis) and satisfactory for PD (83% for main diagnosis and 71% for any diagnosis), compared to standard clinical evaluation. Previous studies have also suggested that identifying ALS and PD patients through inpatient care might have a delay from first symptoms onset of around 1 year and 7.5 years . As outpatient care was not recorded in the National Patient Register during 1985 to 2000, and the diagnostic delay using outpatient care records (2001–2011) was presumably shorter, we excluded the first year after a participant's first blood sampling from the analysis of ALS and the first 5 years after a participant's first blood sampling from the analysis of PD.…”

Section: Methodsmentioning

confidence: 98%

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Peripheral immune biomarkers and neurodegenerative diseases: A prospective cohort study with 20 years of follow‐up

Yazdani

Mariosa

Hammar

et al. 2019

Annals of Neurology

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Objective To assess the associations of several blood immune biomarkers with the future risks of amyotrophic lateral sclerosis and Parkinson disease in a prospective cohort study with 20 years of follow‐up. Methods The Swedish Apolipoprotein‐Related Mortality Risk study is a longitudinal cohort study including 812,073 participants with repeated blood biomarker measurements between 1985 and 1996 and a follow‐up until 2011. Using a Cox model, we first estimated hazard ratios of amyotrophic lateral sclerosis and Parkinson disease in relation to leukocytes, immunoglobulin G, haptoglobin, and uric acid. We further described the temporal changes of these biomarkers during the 20 years prior to the diagnosis of these diseases. Results A total of 585 incident cases of amyotrophic lateral sclerosis and 3,769 incident cases of Parkinson disease were identified during the follow‐up. Increasing concentrations of leukocytes, haptoglobin, and uric acid were associated with a lower risk of Parkinson disease. No statistically significant association was, however, noted between the studied biomarkers and amyotrophic lateral sclerosis. Parkinson disease patients appeared to have lower levels of leukocytes and haptoglobin between 20 and 10 years before diagnosis and lower levels of uric acid during the 20 years before diagnosis, compared to controls, although statistically significant differences were only noted during parts of the respective time intervals after multivariable adjustment. No clear differences were noted between patients with amyotrophic lateral sclerosis and controls. Interpretation If verified in studies of independent populations, our findings may suggest a different role of systemic inflammation on the risk of Parkinson disease compared to amyotrophic lateral sclerosis. ANN NEUROL 2019;86:913–926

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 96%

Section: Methodsmentioning

confidence: 98%

Section: Methodsmentioning

confidence: 98%

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Peripheral immune biomarkers and neurodegenerative diseases: A prospective cohort study with 20 years of follow‐up

Yazdani

Mariosa

Hammar

et al. 2019

Annals of Neurology

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“…All patients were individually followed up from the date of diagnosis until death or October 31, 2018, whichever came first, through the Swedish Motor Neuron Disease Registry. 23 We measured TC (millimoles per liter), LDL-C (millimoles per liter), HDL-C (millimoles per liter), LDL-C/HDL-C ratio, TG (millimoles per liter), ApoAI (grams per liter), ApoB (grams per liter), and ApoB/ApoAI ratio of the enrolled patients using blood samples collected after overnight fasting. The laboratory tests were conducted on fresh blood samples by the Laboratory of Karolinska University Hospital.…”

Section: Methodsmentioning

confidence: 99%

Lipids, apolipoproteins, and prognosis of amyotrophic lateral sclerosis

et al. 2020

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ObjectiveTo determine whether lipids and apolipoproteins predict prognosis of patients with amyotrophic lateral sclerosis in a cohort study of 99 patients with amyotrophic lateral sclerosis who were diagnosed during 2015 to 2018 and followed up until October 31, 2018, at the Neurology Clinic in Karolinska University Hospital in Stockholm, Sweden. MethodsTotal cholesterol, low-density lipoprotein cholesterol, high-density lipoprotein cholesterol, triglycerides, apolipoprotein AI, apolipoprotein B, and lipid ratios were measured at the time of amyotrophic lateral sclerosis diagnosis or shortly thereafter. Death after amyotrophic lateral sclerosis diagnosis was used as the main outcome. The Cox model was used to estimate hazard ratios with 95% confidence intervals of death after amyotrophic lateral sclerosis diagnosis, after controlling for sex, age at diagnosis, site of symptom onset, diagnostic delay, body mass index, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised score, and progression rate. ResultsA 1-SD increase of total cholesterol (hazard ratio 0.60, 95% confidence interval 0.41-0.89, p = 0.01), low-density lipoprotein cholesterol (hazard ratio 0.64, 95% confidence interval 0.44-0.92, p = 0.02), low-density lipoprotein cholesterol/high-density lipoprotein cholesterol ratio (hazard ratio 0.65, 95% confidence interval 0.46-0.92, p = 0.02), apolipoprotein B (hazard ratio 0.62, 95% confidence interval 0.44-0.88, p = 0.01), or apolipoprotein B/apolipoprotein AI ratio (hazard ratio 0.61, 95% confidence interval 0.43-0.86, p < 0.01) was associated with a lower risk of death after amyotrophic lateral sclerosis diagnosis. A dose-response relationship was also noted when these biomarkers were analyzed as categorical variables. ConclusionsLipids and apolipoproteins are important prognostic indicators for amyotrophic lateral sclerosis and should be monitored at the diagnosis of amyotrophic lateral sclerosis.

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