Palma Jose-Alberto, Krismer Florian, Meissner Wassilios G, Kuijpers Mechteld, Millar-Vernetti Patricio, Perez Miguel A, Fanciulli Alessandra, Norcliffe-Kaufmann Lucy, Bower Pam, Wenning Gregor K, Kaufmann Horacio
Department of Neurology, Dysautonomia Center New York University School of Medicine New York New York USA.
Department of Neurology Innsbruck Medical University Innsbruck Austria.
Mov Disord Clin Pract. 2022 Aug 29;9(7):967-971. doi: 10.1002/mdc3.13544. eCollection 2022 Oct.
The Global Multiple System Atrophy Registry (GLOMSAR) was established in 2013. It is an online patient-reported contact registry open and free that relies on self-reported diagnosis by the patient or caregiver.
To report the demographics of patients enrolled in GLOMSAR and the results of an ancillary online symptom questionnaire.
Patients enrolled in GLOMSAR were invited to complete a custom-designed online questionnaire about disease onset and symptom prevalence.
At the time of writing, there were 1083 participants in GLOMSAR, of which 33% (365) completed the questionnaire. The onset and frequency of most symptoms was similar to those reported in the literature in physician-reported studies. Some were understudied or not typically associated with multiple system atrophy (MSA), including reduced female sexual sensation (55%), forgetfulness (60%), pseudobulbar affect (37%), olfactory changes (36%), and visual hallucinations (21%).
Patient-reported studies and ancillary online questionnaires are valid, underused research tools useful to advance our knowledge on understudied MSA features and highlight the patients' voice.
全球多系统萎缩登记处（GLOMSAR）于2013年成立。它是一个在线的、由患者报告的联系登记处，开放且免费，依靠患者或护理人员自我报告的诊断信息。
报告GLOMSAR登记患者的人口统计学特征以及一份辅助在线症状问卷的结果。
邀请GLOMSAR登记的患者完成一份关于疾病发作和症状患病率的定制在线问卷。
在撰写本文时，GLOMSAR有1083名参与者，其中33%（365名）完成了问卷。大多数症状的发作情况和频率与医生报告研究中的文献报道相似。一些症状研究较少或通常与多系统萎缩（MSA）无关，包括女性性感觉减退（55%）、健忘（60%）、假性球麻痹（37%）、嗅觉改变（36%）和视幻觉（21%）。
患者报告研究和辅助在线问卷是有效的、未充分利用的研究工具，有助于增进我们对研究较少的MSA特征的了解，并突出患者的声音。
