Clinical trial NCT06072105 - References

Multiple System Atrophy — Medical Decision Making in Multiple System Atrophy

Citation(s)

•   Adams JL, Myers TL, Waddell EM, Spear KL, Schneider RB
  Telemedicine: A valuable tool in neurodegenerative diseases. Curr Geriatr Rep. 2020 Jun;9(2):72-81. doi: 10.1007/s13670-020-00311-z. Epub 2020 Mar 14.
•   Alonso CCG, de Freitas PB, Pires RS, De Oliveira DL, Freitas SMSF
  Exploring the ability of strength and dexterity tests to detect hand function impairment in individuals with Parkinson's disease. Physiother Theory Pract. 2023 Feb;39(2):395-404. doi: 10.1080/09593985.2021.2013371. Epub 2021 Dec 12.
•   Bartolome G, Starrost U, Schroter-Morasch H, Schilling B, Fischbacher L, Kues L, Graf S, Ziegler W
  Validation of the Munich Swallowing Score (MUCSS) in patients with neurogenic dysphagia: A preliminary study. NeuroRehabilitation. 2021;49(3):445-457. doi: 10.3233/NRE-210011.
•   Bastien CH, Vallieres A, Morin CM
  Validation of the Insomnia Severity Index as an outcome measure for insomnia research. Sleep Med. 2001 Jul;2(4):297-307. doi: 10.1016/s1389-9457(00)00065-4.
•   Bloem BR, Henderson EJ, Dorsey ER, Okun MS, Okubadejo N, Chan P, Andrejack J, Darweesh SKL, Munneke M
  Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care. Lancet Neurol. 2020 Jul;19(7):623-634. doi: 10.1016/S1474-4422(20)30064-8. Epub 2020 May 25.
•   Borders JC, Sevitz JS, Malandraki JB, Malandraki GA, Troche MS
  Objective and Subjective Clinical Swallowing Outcomes via Telehealth: Reliability in Outpatient Clinical Practice. Am J Speech Lang Pathol. 2021 Mar 26;30(2):598-608. doi: 10.1044/2020_AJSLP-20-00234. Epub 2021 Feb 8.
•   Brignole M, Moya A, de Lange FJ, Deharo JC, Elliott PM, Fanciulli A, Fedorowski A, Furlan R, Kenny RA, Martin A, Probst V, Reed MJ, Rice CP, Sutton R, Ungar A, van Dijk JG; ESC Scientific Document Group
  2018 ESC Guidelines for the diagnosis and management of syncope. Eur Heart J. 2018 Jun 1;39(21):1883-1948. doi: 10.1093/eurheartj/ehy037. No abstract available.
•   Calandra-Buonaura G, Alfonsi E, Vignatelli L, Benarroch EE, Giannini G, Iranzo A, Low PA, Martinelli P, Provini F, Quinn N, Tolosa E, Wenning GK, Abbruzzese G, Bower P, Antonini A, Bhatia KP, Bonavita J, Pellecchia MT, Pizzorni N, Tison F, Ghorayeb I, Meissner WG, Ozawa T, Pacchetti C, Pozzi NG, Vicini C, Schindler A, Cortelli P, Kaufmann H
  Dysphagia in multiple system atrophy consensus statement on diagnosis, prognosis and treatment. Parkinsonism Relat Disord. 2021 May;86:124-132. doi: 10.1016/j.parkreldis.2021.03.027. Epub 2021 Mar 30.
•   Chan LML, Yan OY, Lee JJJ, Lam WWT, Lin CC, Auyeung M, Bloem BR, Kwok JYY
  Effects of Palliative Care for Progressive Neurologic Diseases: A Systematic Review and Meta-Analysis. J Am Med Dir Assoc. 2023 Feb;24(2):171-184. doi: 10.1016/j.jamda.2022.11.001. Epub 2022 Dec 5.
•   Chung F, Yegneswaran B, Liao P, Chung SA, Vairavanathan S, Islam S, Khajehdehi A, Shapiro CM
  STOP questionnaire: a tool to screen patients for obstructive sleep apnea. Anesthesiology. 2008 May;108(5):812-21. doi: 10.1097/ALN.0b013e31816d83e4.
•   Coon EA, Golden EP, Bryarly M, McGregor T, Nguyen BN, Moutvic MA, Cutsforth-Gregory JK, Stevens PM, Chou CZ, Rhee L, Vernino S
  A call for multiple system atrophy centers of excellence. Clin Auton Res. 2022 Jun;32(3):205-208. doi: 10.1007/s10286-022-00866-1. Epub 2022 May 12. No abstract available.
•   Cortelli P, Calandra-Buonaura G, Benarroch EE, Giannini G, Iranzo A, Low PA, Martinelli P, Provini F, Quinn N, Tolosa E, Wenning GK, Abbruzzese G, Bower P, Alfonsi E, Ghorayeb I, Ozawa T, Pacchetti C, Pozzi NG, Vicini C, Antonini A, Bhatia KP, Bonavita J, Kaufmann H, Pellecchia MT, Pizzorni N, Schindler A, Tison F, Vignatelli L, Meissner WG
  Stridor in multiple system atrophy: Consensus statement on diagnosis, prognosis, and treatment. Neurology. 2019 Oct 1;93(14):630-639. doi: 10.1212/WNL.0000000000008208.
•   da Silva BA, Faria CDCM, Santos MP, Swarowsky A
  Assessing Timed Up and Go in Parkinson's disease: Reliability and validity of Timed Up and Go Assessment of biomechanical strategies. J Rehabil Med. 2017 Nov 21;49(9):723-731. doi: 10.2340/16501977-2254.
•   Dayal AM, Jenkins ME, Jog MS, Kimpinski K, MacDonald P, Gofton TE
  Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review. Can J Neurol Sci. 2017 May;44(3):276-282. doi: 10.1017/cjn.2016.439. Epub 2017 Feb 7.
•   De Dobbeleer L, Beyer I, Hansen AM, Molbo D, Mortensen EL, Lund R, Bautmans I
  Grip Work Measurement with the Jamar Dynamometer: Validation of a Simple Equation for Clinical Use. J Nutr Health Aging. 2019;23(2):221-224. doi: 10.1007/s12603-019-1155-4.
•   Dillen K, Goereci Y, Dunkl V, Muller A, Fink GR, Voltz R, Hocaoglu M, Warnke C, Golla H
  Cultural adaptation of the Integrated Palliative care Outcome Scale for neurological symptoms. Palliat Support Care. 2023 Apr 11:1-10. doi: 10.1017/S1478951523000238. Online ahead of print.
•   Drummond MF, Schwartz JS, Jonsson B, Luce BR, Neumann PJ, Siebert U, Sullivan SD
  Key principles for the improved conduct of health technology assessments for resource allocation decisions. Int J Technol Assess Health Care. 2008 Summer;24(3):244-58; discussion 362-8. doi: 10.1017/S0266462308080343.
•   Ende J, Kazis L, Ash A, Moskowitz MA
  Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med. 1989 Jan-Feb;4(1):23-30. doi: 10.1007/BF02596485.
•   Eschlbock S, Wenning G, Fanciulli A
  Evidence-based treatment of neurogenic orthostatic hypotension and related symptoms. J Neural Transm (Vienna). 2017 Dec;124(12):1567-1605. doi: 10.1007/s00702-017-1791-y. Epub 2017 Oct 22. Erratum In: J Neural Transm (Vienna). 2017 Nov 28;:
•   Fanciulli A, Wenning GK
  Multiple-system atrophy. N Engl J Med. 2015 Jan 15;372(3):249-63. doi: 10.1056/NEJMra1311488. No abstract available.
•   Folstein MF, Folstein SE, McHugh PR
  "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975 Nov;12(3):189-98. doi: 10.1016/0022-3956(75)90026-6. No abstract available.
•   Frauscher B, Ehrmann L, Zamarian L, Auer F, Mitterling T, Gabelia D, Brandauer E, Delazer M, Poewe W, Hogl B
  Validation of the Innsbruck REM sleep behavior disorder inventory. Mov Disord. 2012 Nov;27(13):1673-8. doi: 10.1002/mds.25223.
•   Freynhagen R, Baron R, Gockel U, Tolle TR
  painDETECT: a new screening questionnaire to identify neuropathic components in patients with back pain. Curr Med Res Opin. 2006 Oct;22(10):1911-20. doi: 10.1185/030079906X132488.
•   Gallop K, Pham N, Maclaine G, Saunders E, Black B, Hubig L, Acaster S
  Health-related quality-of-life and burden for caregivers of individuals with neurogenic orthostatic hypotension. Neurodegener Dis Manag. 2023 Feb;13(1):35-45. doi: 10.2217/nmt-2022-0015. Epub 2022 Nov 16.
•   Gibbons CH, Schmidt P, Biaggioni I, Frazier-Mills C, Freeman R, Isaacson S, Karabin B, Kuritzky L, Lew M, Low P, Mehdirad A, Raj SR, Vernino S, Kaufmann H
  The recommendations of a consensus panel for the screening, diagnosis, and treatment of neurogenic orthostatic hypotension and associated supine hypertension. J Neurol. 2017 Aug;264(8):1567-1582. doi: 10.1007/s00415-016-8375-x. Epub 2017 Jan 3.
•   Groen J, Pannek J, Castro Diaz D, Del Popolo G, Gross T, Hamid R, Karsenty G, Kessler TM, Schneider M, 't Hoen L, Blok B
  Summary of European Association of Urology (EAU) Guidelines on Neuro-Urology. Eur Urol. 2016 Feb;69(2):324-33. doi: 10.1016/j.eururo.2015.07.071. Epub 2015 Aug 22.
•   Hawthorne G, Sansoni J, Hayes L, Marosszeky N, Sansoni E
  Measuring patient satisfaction with health care treatment using the Short Assessment of Patient Satisfaction measure delivered superior and robust satisfaction estimates. J Clin Epidemiol. 2014 May;67(5):527-37. doi: 10.1016/j.jclinepi.2013.12.010.
•   Hepgul N, Wilson R, Yi D, Evans C, Bajwah S, Crosby V, Wilcock A, Lindsay F, Byrne A, Young C, Groves K, Smith C, Burman R, Chaudhuri KR, Silber E, Higginson IJ, Gao W
  Immediate versus delayed short-term integrated palliative care for advanced long-term neurological conditions: the OPTCARE Neuro RCT. Southampton (UK): NIHR Journals Library; 2020 Sep. Available from http://www.ncbi.nlm.nih.gov/books/NBK561537/
•   Jasemi M, Valizadeh L, Zamanzadeh V, Keogh B
  A Concept Analysis of Holistic Care by Hybrid Model. Indian J Palliat Care. 2017 Jan-Mar;23(1):71-80. doi: 10.4103/0973-1075.197960.
•   Jordan J, Fanciulli A, Tank J, Calandra-Buonaura G, Cheshire WP, Cortelli P, Eschlboeck S, Grassi G, Hilz MJ, Kaufmann H, Lahrmann H, Mancia G, Mayer G, Norcliffe-Kaufmann L, Pavy-Le Traon A, Raj SR, Robertson D, Rocha I, Reuter H, Struhal W, Thijs RD, Tsioufis KP, Gert van Dijk J, Wenning GK, Biaggioni I
  Management of supine hypertension in patients with neurogenic orthostatic hypotension: scientific statement of the American Autonomic Society, European Federation of Autonomic Societies, and the European Society of Hypertension. J Hypertens. 2019 Aug;37(8):1541-1546. doi: 10.1097/HJH.0000000000002078.
•   Kwakkenbos L, Fransen J, Vonk MC, Becker ES, Jeurissen M, van den Hoogen FH, van den Ende CH
  A comparison of the measurement properties and estimation of minimal important differences of the EQ-5D and SF-6D utility measures in patients with systemic sclerosis. Clin Exp Rheumatol. 2013 Mar-Apr;31(2 Suppl 76):50-6. Epub 2013 Jul 22.
•   Lang JT, Kassan TO, Devaney LL, Colon-Semenza C, Joseph MF
  Test-Retest Reliability and Minimal Detectable Change for the 10-Meter Walk Test in Older Adults With Parkinson's disease. J Geriatr Phys Ther. 2016 Oct-Dec;39(4):165-70. doi: 10.1519/JPT.0000000000000068.
•   Miyashita M, Narita Y, Sakamoto A, Kawada N, Akiyama M, Kayama M, Suzukamo Y, Fukuhara S
  Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. J Neurol Sci. 2009 Jan 15;276(1-2):148-52. doi: 10.1016/j.jns.2008.09.022. Epub 2008 Oct 26.
•   Morris ME, Slade SC, Wittwer JE, Blackberry I, Haines S, Hackney ME, McConvey VB
  Online Dance Therapy for People With Parkinson's Disease: Feasibility and Impact on Consumer Engagement. Neurorehabil Neural Repair. 2021 Dec;35(12):1076-1087. doi: 10.1177/15459683211046254. Epub 2021 Sep 29.
•   Ona ED, Jardon A, Cuesta-Gomez A, Sanchez-Herrera-Baeza P, Cano-de-la-Cuerda R, Balaguer C
  Validity of a Fully-Immersive VR-Based Version of the Box and Blocks Test for Upper Limb Function Assessment in Parkinson's Disease. Sensors (Basel). 2020 May 13;20(10):2773. doi: 10.3390/s20102773.
•   Perez-Lloret S, van de Warrenburg B, Rossi M, Rodriguez-Blazquez C, Zesiewicz T, Saute JAM, Durr A, Nishizawa M, Martinez-Martin P, Stebbins GT, Schrag A, Skorvanek M; members of the MDS Rating Scales Review Committee
  Assessment of Ataxia Rating Scales and Cerebellar Functional Tests: Critique and Recommendations. Mov Disord. 2021 Feb;36(2):283-297. doi: 10.1002/mds.28313. Epub 2020 Oct 6.
•   Pillas M, Selai C, Quinn NP, Lees A, Litvan I, Lang A, Bower J, Burn D, Low P, Schrag A
  Development and validation of a carers quality-of-life questionnaire for parkinsonism (PQoL Carers). Qual Life Res. 2016 Jan;25(1):81-8. doi: 10.1007/s11136-015-1071-y. Epub 2015 Aug 12.
•   Pinto S, Caldeira S, Martins JC
  e-Health in palliative care: review of literature, Google Play and App Store. Int J Palliat Nurs. 2017 Aug 2;23(8):394-401. doi: 10.12968/ijpn.2017.23.8.394.
•   Randerath W, Verbraecken J, Andreas S, Arzt M, Bloch KE, Brack T, Buyse B, De Backer W, Eckert DJ, Grote L, Hagmeyer L, Hedner J, Jennum P, La Rovere MT, Miltz C, McNicholas WT, Montserrat J, Naughton M, Pepin JL, Pevernagie D, Sanner B, Testelmans D, Tonia T, Vrijsen B, Wijkstra P, Levy P
  Definition, discrimination, diagnosis and treatment of central breathing disturbances during sleep. Eur Respir J. 2017 Jan 18;49(1):1600959. doi: 10.1183/13993003.00959-2016. Print 2017 Jan.
•   Schrag A, Selai C, Jahanshahi M, Quinn NP
  The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease. J Neurol Neurosurg Psychiatry. 2000 Jul;69(1):67-73. doi: 10.1136/jnnp.69.1.67.
•   Schrag A, Selai C, Mathias C, Low P, Hobart J, Brady N, Quinn NP
  Measuring health-related quality of life in MSA: the MSA-QoL. Mov Disord. 2007 Dec;22(16):2332-8. doi: 10.1002/mds.21649.
•   Siebert U, Alagoz O, Bayoumi AM, Jahn B, Owens DK, Cohen DJ, Kuntz KM
  State-transition modeling: a report of the ISPOR-SMDM Modeling Good Research Practices Task Force-3. Med Decis Making. 2012 Sep-Oct;32(5):690-700. doi: 10.1177/0272989X12455463.
•   Sletten DM, Suarez GA, Low PA, Mandrekar J, Singer W
  COMPASS 31: a refined and abbreviated Composite Autonomic Symptom Score. Mayo Clin Proc. 2012 Dec;87(12):1196-201. doi: 10.1016/j.mayocp.2012.10.013.
•   Strupp J, Kunde A, Galushko M, Voltz R, Golla H
  Severely Affected by Parkinson Disease: The Patient's View and Implications for Palliative Care. Am J Hosp Palliat Care. 2018 Apr;35(4):579-585. doi: 10.1177/1049909117722006. Epub 2017 Jul 26.
•   Tamplin J, Morris ME, Baker FA, Sousa TV, Haines S, Dunn S, Tull V, Vogel AP
  ParkinSong Online: protocol for a telehealth feasibility study of therapeutic group singing for people with Parkinson's disease. BMJ Open. 2021 Dec 20;11(12):e058953. doi: 10.1136/bmjopen-2021-058953.
•   van Vliet LM, Gao W, DiFrancesco D, Crosby V, Wilcock A, Byrne A, Al-Chalabi A, Chaudhuri KR, Evans C, Silber E, Young C, Malik F, Quibell R, Higginson IJ; OPTCARE Neuro
  How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC Neurol. 2016 May 10;16:63. doi: 10.1186/s12883-016-0583-6.
•   Vellata C, Belli S, Balsamo F, Giordano A, Colombo R, Maggioni G
  Effectiveness of Telerehabilitation on Motor Impairments, Non-motor Symptoms and Compliance in Patients With Parkinson's Disease: A Systematic Review. Front Neurol. 2021 Aug 26;12:627999. doi: 10.3389/fneur.2021.627999. eCollection 2021.
•   Wenning GK, Geser F, Krismer F, Seppi K, Duerr S, Boesch S, Kollensperger M, Goebel G, Pfeiffer KP, Barone P, Pellecchia MT, Quinn NP, Koukouni V, Fowler CJ, Schrag A, Mathias CJ, Giladi N, Gurevich T, Dupont E, Ostergaard K, Nilsson CF, Widner H, Oertel W, Eggert KM, Albanese A, del Sorbo F, Tolosa E, Cardozo A, Deuschl G, Hellriegel H, Klockgether T, Dodel R, Sampaio C, Coelho M, Djaldetti R, Melamed E, Gasser T, Kamm C, Meco G, Colosimo C, Rascol O, Meissner WG, Tison F, Poewe W; European Multiple System Atrophy Study Group
  The natural history of multiple system atrophy: a prospective European cohort study. Lancet Neurol. 2013 Mar;12(3):264-74. doi: 10.1016/S1474-4422(12)70327-7. Epub 2013 Feb 5.
•   Wenning GK, Krismer F
  Multiple system atrophy. Handb Clin Neurol. 2013;117:229-41. doi: 10.1016/B978-0-444-53491-0.00019-5.
•   Wenning GK, Stankovic I, Vignatelli L, Fanciulli A, Calandra-Buonaura G, Seppi K, Palma JA, Meissner WG, Krismer F, Berg D, Cortelli P, Freeman R, Halliday G, Hoglinger G, Lang A, Ling H, Litvan I, Low P, Miki Y, Panicker J, Pellecchia MT, Quinn N, Sakakibara R, Stamelou M, Tolosa E, Tsuji S, Warner T, Poewe W, Kaufmann H
  The Movement Disorder Society Criteria for the Diagnosis of Multiple System Atrophy. Mov Disord. 2022 Jun;37(6):1131-1148. doi: 10.1002/mds.29005. Epub 2022 Apr 21.
•   Wenning GK, Tison F, Seppi K, Sampaio C, Diem A, Yekhlef F, Ghorayeb I, Ory F, Galitzky M, Scaravilli T, Bozi M, Colosimo C, Gilman S, Shults CW, Quinn NP, Rascol O, Poewe W; Multiple System Atrophy Study Group
  Development and validation of the Unified Multiple System Atrophy Rating Scale (UMSARS). Mov Disord. 2004 Dec;19(12):1391-402. doi: 10.1002/mds.20255.
•   Wiblin L, Durcan R, Lee M, Brittain K
  The Importance of Connection to Others in QoL in MSA and PSP. Parkinsons Dis. 2017;2017:5283259. doi: 10.1155/2017/5283259. Epub 2017 Sep 28.
•   Wiblin L, Lee M, Burn D
  Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy. Parkinsonism Relat Disord. 2017 Jan;34:7-14. doi: 10.1016/j.parkreldis.2016.10.013. Epub 2016 Oct 19.
•   Zarit SH, Reever KE, Bach-Peterson J
  Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980 Dec;20(6):649-55. doi: 10.1093/geront/20.6.649. No abstract available.
•   Zigmond AS, Snaith RP
  The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361-70. doi: 10.1111/j.1600-0447.1983.tb09716.x.

Medical Decision Making in Multiple System Atrophy: Developing Personalized Best Medical Care With Integrated Telemedicine and Mobile Palliative Care for Individuals With Multiple System Atrophy

Details for clinical trial NCT06072105