Long-term evolution of patient-reported outcome measures in spinocerebellar ataxias

Author:

Jacobi Heike,du Montcel Sophie Tezenas,Bauer Peter,Giunti Paola,Cook Arron,Labrum Robyn,Parkinson Michael H.,Durr Alexandra,Brice Alexis,Charles Perrine,Marelli Cecilia,Mariotti Caterina,Nanetti Lorenzo,Sarro Lidia,Rakowicz Maria,Sulek Anna,Sobanska Anna,Schmitz-Hübsch Tanja,Schöls Ludger,Hengel Holger,Baliko Laszlo,Melegh Bela,Filla Alessandro,Antenora Antonella,Infante Jon,Berciano José,van de Warrenburg Bart P.,Timmann Dagmar,Szymanski Sandra,Boesch Sylvia,Nachbauer Wolfgang,Kang Jun-Suk,Pandolfo Massimo,Schulz Jörg B.,Melac Audrey Tanguy,Diallo Alhassane,Klockgether Thomas

Funder

Sixth Framework Programme

German Ministry of Education and Research

Polish Ministry of Scientific Research and Information Technology

Hungarian Funding Agency

FP7 Ideas: European Research Council

Publisher

Springer Science and Business Media LLC

Subject

Clinical Neurology,Neurology

Reference28 articles.

1. Paulson HL, Shakkottai VG, Clark HB, Orr HT (2017Oct) Polyglutamine spinocerebellar ataxias—from genes to potential treatments. Nat Rev Neurosci 18(10):613–626

2. U.S. Department of Health and Human Services Food and Drug Administration, Center for Drug Evaluation and Research (CDER), Center for Biologics Evaluation and Research (CBER), Center for Devices and Radiological Health (CDRH) (2009) Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf . Accessed Dec 2009

3. Recinos PF, Dunphy CJ, Thompson N, Schuschu J, Urchek JL 3rd, Katzan IL (2017) Patient satisfaction with collection of patient-reported outcome measures in routine care. Adv Ther 34(2):452–465

4. Bryan S, Davis J, Broesch J, Doyle-Waters MM, Lewis S, McGrail K et al (2014) Choosing your partner for the PROM: a review of evidence on patient-reported outcome measures for use in primary and community care. Healthc Policy 10(2):38–51

5. Schmitz-Hübsch T, Coudert M, Giunti P, Globas C, Baliko L, Fancellu R et al (2010) Self-rated health status in spinocerebellar ataxia—results from a European multicenter study. Mov Disord 25(5):587–595

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