ALSUntangled 51: RCH4

IF 2.5 4区医学 Q2 CLINICAL NEUROLOGY

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2020-01-02 DOI:10.1080/21678421.2019.1675282

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引用次数: 1

Abstract

ALSUntangled reviews alternative and off-label therapies (AOTs) for people with ALS (PALS). Here we provide our opinion on RCH4, for which we have had more than 1700 requests (1). We were first asked to review this product 3 years ago by the family member of a person with ALS. Since then, in spite of our best efforts, we have not been able to obtain much useful disclosable information on RCH4. We define “useful” as information that helps us describe exactly what a product is and helps us complete our Table of Evidence (2). “Disclosable” means information that is in the public domain or that we have been given permission to discuss in a public forum. Since it does not appear to us that any new useful disclosable information is forthcoming, we elected to move forward with the information we have. This is the first and only ALSUntangled review on RCH4. A previous unfavorable review of this product by a person with ALS on their blog (3) has been inaccurately attributed to ALSUntangled (4,5). While this person has done valuable work with our team before, he has clearly stated that his RCH4 review is separate from any work he has done with us and was not formulated using ALSUntangled standard operating procedures (SOPs) which includes review by our international team of clinicians and scientists.

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AL缝合51:RCH4

ALSUntangled回顾了ALS (PALS)患者的替代疗法和标签外疗法(aot)。在这里，我们提供我们对RCH4的意见，我们已经有超过1700个请求(1)。3年前，一位ALS患者的家庭成员第一次要求我们审查该产品。从那时起，尽管我们尽了最大的努力，但我们未能获得关于RCH4的许多有用的可披露信息。我们将“有用”定义为帮助我们准确描述产品并帮助我们完成证据表(2)的信息。“可披露”是指处于公共领域或我们已获准在公共论坛上讨论的信息。由于在我们看来没有任何新的有用的可披露信息即将到来，我们决定继续使用我们所拥有的信息。这是第一个也是唯一一个关于RCH4的ALSUntangled综述。此前一位ALS患者在其博客上对该产品的负面评论(3)被错误地归因于ALSUntangled(4,5)。虽然此人之前在我们团队中做过有价值的工作，但他明确表示，他的RCH4审查与他在我们团队中所做的任何工作都是分开的，并且没有按照ALSUntangled标准操作程序(sop)制定，其中包括我们的国际临床医生和科学家团队的审查。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration CLINICAL NEUROLOGY-

CiteScore

5.40

自引率

10.70%

发文量

期刊介绍： Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration is an exciting new initiative. It represents a timely expansion of the journal Amyotrophic Lateral Sclerosis in response to the clinical, imaging pathological and genetic overlap between ALS and frontotemporal dementia. The expanded journal provides outstanding coverage of research in a wide range of issues related to motor neuron diseases, especially ALS (Lou Gehrig’s disease) and cognitive decline associated with frontotemporal degeneration. The journal also covers related disorders of the neuroaxis when relevant to these core conditions.