A practical approach to remote longitudinal follow-up of Parkinson's disease: the FOUND study.
A practical approach to remote longitudinal follow-up of Parkinson's disease: the FOUND study.
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帕金森病远程纵向随访的实用方法：FOUND 研究。
DOI：
10.1002/mds.25814
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发表时间：
2014
期刊：
影响因子：
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通讯作者：
Elliott,Rob
中科院分区：
文献类型：
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作者：
Tanner,CarolineM;Meng,CherylC;Ravina,Bernard;Lang,Anthony;Kurlan,Roger;Marek,Kenneth;Oakes,David;Seibyl,John;Flagg,Emily;Gauger,Lisa;Guest,DoloresD;Goetz,ChristopherG;Kieburtz,Karl;DiEuliis,Diane;Fahn,Stanley;Elliott,Rob
本研究的目的是检查一种与参与临床研究的帕金森病 (PD) 患者保持长期联系的远程方法。需要对帕金森病患者进行长期随访，以填补进展、生物标志物和治疗方面的关键信息空白。前瞻性的现场评估可能成本高昂，而且对于某些患者来说可能是不可能的。使用邮件和电话联系的远程评估可能是一种实用的后续方法。 2006 年参加帕金森病多中心纵向和生物标志物研究 (LABS-PD) 现场随访研究的患者被邀请参加神经系统疾病患者随访 (FOUND)，该研究由一个中心根据单独的中央机构审查委员会协议进行监督。 FOUND 使用邮寄问卷和电话访谈来评估 PD 状态。 2011 年 LABS-PD 现场访问结束后，FOUND 随访继续进行。确定了远程评估和现场评估之间的保留和一致性。总共 499 名符合条件的患者中有 422 名 (84.5%) 自愿参加，并且 96% 的参与者被保留。在 60 名从 LABS-PD 中撤回同意的患者中，有 51 名患者被保留在 FOUND 中。在 341 名活跃于 LABS-PD 的患者中，当亲自就诊停止时，340 名患者保留在 FOUND 中（99.7%）。远程评估和现场评估在诊断、疾病特征（例如运动障碍）和 PD 药物方面的精确一致性≥ 80%。专家评定和自我报告的统一帕金森病评定量表与运动障碍协会统一帕金森病评定量表之间的相关性（有时相隔几个月进行检查）对于大多数项目而言是中等或显着的。通过对患有帕金森病的研究参与者进行远程随访，保留率非常好，与亲自访问相结合时提供了安全网，而且作为一种独立的评估方法也是有效的，在亲自评估不可行时提供了一种有用的替代方法。 © 2014 国际帕金森和运动障碍协会
The objective of this study was to examine a remote method for maintaining long‐term contact with Parkinson's disease (PD) patients participating in clinical studies. Long‐term follow‐up of PD patients is needed to fill critical information gaps on progression, biomarkers, and treatment. Prospective in‐person assessment can be costly and may be impossible for some patients. Remote assessment using mail and telephone contact may be a practical follow‐up method. Patients enrolled in the multi‐center Longitudinal and Biomarker Study in Parkinson's Disease (LABS‐PD) in‐person follow‐up study in 2006 were invited to enroll in Follow‐up of Persons With Neurologic Diseases (FOUND), which is overseen by a single center under a separate, central institutional review board protocol. FOUND uses mailed questionnaires and telephone interviews to assess PD status. FOUND follow‐up continued when LABS‐PD in‐person visits ended in 2011. Retention and agreement between remote and in‐person assessments were determined. In total, 422 of 499 (84.5%) of eligible patients volunteered, AND 96% of participants were retained. Of 60 patients who withdrew consent from LABS‐PD, 51 were retained in FOUND. Of 341 patients who were active in LABS‐PD, 340 were retained in FOUND (99.7%) when the in‐person visits ceased. Exact agreement between remote and in‐person assessments was ≥ 80% for diagnosis, disease features (eg, dyskinesias), and PD medication. Correlation between expert‐rated and self‐reported Unified Parkinson's Disease Rating Scale and Movement Disorder Society Unified Parkinson's Disease Rating Scale, which were examined at times separated by several months, was moderate or substantial for most items. Retention was excellent using remote follow‐up of research participants with PD, providing asafety netwhen combined with in‐person visits, and also is effective as a stand‐alone assessment method, providing a useful alternative when in‐person evaluation is not feasible. © 2014 International Parkinson and Movement Disorder Society