A Practical Approach to Remote Longitudinal Follow-up of Parkinson%26apos;s Disease: The FOUND Study

作者：Tanner Caroline M^*; Meng Cheryl C; Ravina Bernard; Lang Anthony; Kurlan Roger; Marek Kenneth; Oakes David; Seibyl John; Flagg Emily; Gauger Lisa; Guest Dolores D; Goetz Christopher G; Kieburtz Karl; DiEuliis Diane; Fahn Stanley; Elliott Robin A; Shoulson Ira

来源：Movement Disorders, 2014, 29(6): 743-749.

DOI：10.1002/mds.25814

• Parkinson%26apos
• s disease
• longitudinal
• follow-up

The objective of this study was to examine a remote method for maintaining long-term contact with Parkinson%26apos;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%26apos;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%26apos;s Disease Rating Scale and Movement Disorder Society Unified Parkinson%26apos;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 a safety net when 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.

• 出版日期2014-5
• 单位Biogen Idec