Medical Decision Making in Multiple System Atrophy (MeDeMSA)

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

The goal of this clinical study is to evaluate the effects of a personalized symptomatic treatment plan integrated with monthly telemedicine and mobile palliative care interventions on a population of individuals diagnosed with Multiple System Atrophy (MSA) and their informal caregivers. The aim is to improve the quality of life of MSA patients and their caregivers, as well as provide them with better support during the disease progression. After a baseline visit, all 46 patients will receive a personalized therapeutic plan (including medical treatment, physiotherapy, logotherapy and occupational therapy excercises and psychological support) and contact with social workers and a palliative care team. They willl then be re-evaluated at 6-,12-, 18- month visits. Semi-structured online interviews at baseline and 12 month visit will collect patients' individual healthcare preferences, which will be taken into account in the preparation of the individual therapeutic plan. Twenty-three patients will be randomized to receive monthly telemedicine visits. Assessment of patients´satisfaction with the therapeutic plan, with the palliative interventions (when they occurred) and the telemedicine visits will be carried over the 18 month period. Forty-six informal caregivers will be invited to participate with semi-structured online interviews and assessment of their QoL and caregivers' burden.

This is a monocentric, 18-months, randomized, rater-blinded study to evaluate the influence of a multidisciplinary, personalized symptomatic treatment plan with integrated mobile palliative care and telemedicine on the baseline to 18-months change in the QoL of individuals with MSA compared to a sex-, age- and disease-duration matched historical European MSA cohort, whose data is stored at the Medical University of Innsbruck. We plan to recruit 46 individuals with MSA fulfilling all the inclusionand none of the exclusion criteria. Upon collection of written informed consent, the recruited individuals will be instructed to complete a falls protocol referred to the month preceding the baseline visit, as well as a blood pressure (BP), bladder diary for up to 72 hours prior to the baseline visit. They will subsequently undergo a baseline examination including a comprehensive clinical, psychological and neuro-rehabilitation assessment, as well as an online semi-structured interview aimed at pinpointing the individual therapeutic needs and healthcare preferences. In case additional examinations are needed, these will be carried out on the same day of the baseline visit or, if not possible for individual or appointment reasons, at the earliest possible time point within the given timeframe as outlined in the visit schedule. Upon completion of the baseline visit and examinations, the individualized therapeutic plan, including mobile palliative care offer (for wheelchair-bound individuals) and guidance for self-practiced physio-, speech and occupational exercises will be prepared based on a standardized operational protocol drafted by the study team on the basis of published consensus recommendations, scientific evidence and principles of good clinical practice and adapted to the individual healthcare preferences and therapeutic needs of the recruited individuals. Six, 12 and 18 months after the baseline visit, in-person visits will be scheduled, including a comprehensive clinical, psychological and neuro-rehabilitation re-assessment of the individual therapeutic needs. Therapeutic adaptations will be made following the standardized operational protocol and adapted to the individual healthcare preferences. At month 12 the online semi-structured interview will be repeated to assess for eventual changes in the individual healthcare preferences due to the disease progression. At month 1, 7 and 13, follow-up phone calls will be scheduled to verify the compliance with the individualized treatment plan and identify barriers to its application. At month 1, 7, 13 and 18, the study participants will be invited to complete online satisfaction surveys with the overall individualized treatment plan. Twenty-three patients will be block-wise randomized to receive additional monthly and on-demand neurological, psychological, physio-, occupational and speech therapy (based on individual needs) telemedicine visits through the CHES teleconsultation facility of the Tirol Kliniken. Upon completion of the telemedicine visit (or on-demand mobile palliative interventions, for wheelchair-bound individuals, whenever needed and wished), brief satisfaction surveys will be sent to the study participants through the CHES platform. Informal caregivers of the individuals with MSA recruited in the present study will be invited to participate upon written informed consent in an 18 months observational study, with baseline and 12 months semi-structured online interviews and baseline, 6-, 12- and 18 months assessment of their QoL and caregivers' burden.

Monthly telemedicine neurological, psychological and neurorehabilitation (physio-, occupational and speech therapy) consultations

Multidisciplinary, personalized symptomatic treatment plus mobile palliative care interventions (if wished and needed)

It includes total and subscores, as video-based, rater-blinded assessment of the UMSARS motor score and Hoehn & Yahr changes over the study period.

The clinical milestones are falls at least once a day, feeding by nasogastric tube or gastrostomy, unintelligible speech, indwelling catheter, wheelchair dependency.

Changes in the individual healthcare preferences assessed by means of the Autonomy Preference Index (API)

In-person and telemedicine medical, psychological and neurorehabilitation interventional needs of individuals with MSA

Change in the Short Assessment of Patient Satisfaction (SAPS) referred to the overall individualized treatment plan

The individual satisfaction will be assessed by means of online numeric rating scales and open-ended questions

Healthcare professionals satisfaction with the single telemedicine and mobile palliative interventions

The individual healthcare professionals satisfaction will be assessed by means of online numeric rating scales and open-ended questions

Record of number of medical complications occurred (e.g. falls with or w/o injuries, urinary tract infections, choking, aspiration pneumonia, hospitalizations, death, others)

Changes in the EQ-5D-5L score of informal caregivers of individuals with MSA recruited in the present study

Change in the Carers quality-of-life questionnaire for parkinsonism (PQoL Carers) score and other caregiver-burden indicators in informal caregivers of individuals with MSA recruited in the present study

Assessment of improvement of caregivers´quality of life specifically designed for the caregivers of individuals diagnosed with Parkinsonisms

Inclusion Criteria For individuals with MSA: i. Age ≥30 years at the time of consent; ii. Diagnosed with clinically probable or clinically established MSA according to the current MDS MSA criteria (1); iii. Life-expectancy of at least 24 months as assessed by the investigator at the time of consent; iv. Understands and agrees to comply with the study procedures and provides written informed consent (Note: a legal representative may NOT provide consent on behalf of the subject); v. Signed and dated informed consent document; vi. Fluency in German; vii. Living in Tyrol, if not able to walk or stand without assistance/support at the time of consent. For informal caregivers: i. Informal caregiver (i.e. person not receiving payment for his/her caregiving) of an individual with MSA recruited in the present study; ii. Life-expectancy of at least 24 months as assessed by the investigator at the time of consent; iii. Age≥ 18 years at the time of consent; iv. Understands and agrees to provide information as outlined in the study protocol and to engage in semi-structured online interviews; v. Provides signed and dated written informed consent; vi. Full legal capacity; vii. Fluency in German. Exclusion Criteria For individuals with MSA i. Participation in an interventional clinical study at screening and throughout the study that would interfere with the MeDeMSA Care personalized treatment plan or would not permit telemedicine and mobile palliative care strategies; ii. Charlson comorbidity index >4 at the time of consent; iii. Other major underlying medical conditions that may confound interpretation of study results as assessed by the investigator.

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, Krismer F. Multiple system atrophy. Handb Clin Neurol. 2013;117:229-41. doi: 10.1016/B978-0-444-53491-0.00019-5.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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/

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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;:

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.

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.

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.