Rate of disease progression: a prognostic biomarker in ALS

Labra, Julie; Menon, Parvathi; Byth, Karen; Morrison, Shea; Vucic, Steve

doi:10.1136/jnnp-2015-310998

Cited by 154 publications

(123 citation statements)

References 22 publications

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“…also it has been demonstrated that progression rate of ALS can be used as an important prognostic marker of the disease [15][16][17][18] . Unlike the consensus about the progression of physical disability in ALS patients, there has been a debate about QOL.…”

Section: Discussionmentioning

confidence: 99%

Trends of quality of life changes in amyotrophic lateral sclerosis patients

Shamshiri

Fatehi

Abolfazli

et al. 2016

Journal of the Neurological Sciences

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Section: Discussionmentioning

confidence: 99%

Trends of quality of life changes in amyotrophic lateral sclerosis patients

Shamshiri

Fatehi

Abolfazli

et al. 2016

Journal of the Neurological Sciences

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“…It is decided by the ratio of difference between the baseline of ALSFRS-r and ALSFRS-r at first visit (48-ALSFRS-r)/onset to diagnosis interval (ODI) [11][12][13] . According to the median of progression rate, we classified patients into 2 groups: quick-progression group, where progression rate is equal or >0.625; slow-progression group, where progression rate is <0.625.…”

Section: Progression Ratementioning

confidence: 99%

Spread Direction and Prognostic Factors in Limb-Onset Sporadic Amyotrophic Lateral Sclerosis

Jin

Jia

et al. 2016

Eur Neurol

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Objective: To investigate the spread direction and prognostic factors in limb-onset sporadic amyotrophic lateral sclerosis (sALS). Methods: Medical records of 128 patients with sALS were reviewed. Variables studied were age at symptom onset, gender, region and lateralization of onset, onset to diagnosis interval (ODI), progression direction, bulbar-involved, time from onset to bulbar-involved, ALSFRS-r, upper motor neuron (UMN) signs and progression rate. Results: First, the horizontal and vertical directions are major spreading directions in limb-onset sALS. Second, in crossed and interposed groups, while ODI is shorter, the progression rate is faster and UMN signs are more pronounced (p < 0.05). Third, ALSFRS-r, UMN signs and progression rate have significant differences between with-bulbar-involved and without-bulbar-involved (p < 0.05). The progression rate is related to the time from onset symptoms to bulbar-involved (correlation coefficient -0.535, p = 0.00). Fourth, in multivariate regression analysis, progression rate could respectively increase by about 1.14 and 3.89 times with shorter ODI and bulbar-involved in limb-onset sALS patients. Conclusions: The horizontal and vertical directions are the major spread directions in limb-onset sALS. Except for ALSFRS-r and ODI, bulbar-involved is an adverse factor for ALS progression, and progression rate is related to the time from onset symptoms to bulbar-involved.

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“…Based on these records, we conclude that the patient likely did have ALS. His progression between 1993 and 1996 (before he started his protocol) was very slow (decreased by 10 ALSFRS points over 36 months) compared to the average PALS (decrease of 1 ALSFRS point per month (15). Unfortunately, we do not have more recent records to be able to confirm the stability or improvement in his neurological function that he reported between 1996 and the time of his death.…”

Section: Casesmentioning

confidence: 79%

ALSUntangled 41: “Eric Is Winning”

2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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THE ALSUNTANGLED GROUPALSUntangled reviews alternative and off label treatments (AOTs) for people with ALS (PALS). Here, in response to 771 requests (1), we evaluate the regimen described in the book ''Eric Is Winning'' by Eric Edney (2). We will refer to this regimen as EIW. OverviewEric Edney, an insurance agent, reportedly experienced his first symptoms of ALS in 1990 and was diagnosed with ALS in 1993 at age 64 years (2,3). In 1996, after 'gathering all of the available information, putting it together, and applying some common sense' he developed a multi-phase health regimen for himself (2). His EIW regimen (Table 1) included detoxes, exposures to avoid, dietary changes, nutritional supplements, cleansing treatments, hormone therapy, prayer, and meditation. He continued to tweak his EIW regimen over the years and he felt strongly that his regimen prevented further decline and may even have reversed some of his ALS symptoms. He reportedly died at 85 years of age from complications of a heart attack and stroke -not from ALS (4).Eric's website sells a book about his regimen, and another he wrote called 'Surviving Without Your MD.' The website also endorses specific suppliers and practitioners who provide products and services in the EIW regimen. In our opinion, such sales and endorsements create a potential conflict of interest.

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Rate of disease progression: a prognostic biomarker in ALS

Cited by 154 publications

References 22 publications

Trends of quality of life changes in amyotrophic lateral sclerosis patients

Trends of quality of life changes in amyotrophic lateral sclerosis patients

Spread Direction and Prognostic Factors in Limb-Onset Sporadic Amyotrophic Lateral Sclerosis

ALSUntangled 41: “Eric Is Winning”

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