NCT02333175

Brief Summary

The aim of this project is to evaluate the needs and provision of care for patients in the late stages of Parkinsonism and their carers in several European countries, to compare the effectiveness of different health and social care systems, and to lay the foundation for improved outcomes in this population. The investigators will undertake an in-depth assessment of patients and their care arrangements in a population recruited through networks in six European countries. The systems and procedures that are used in the provision of care will be reviewed through a systematic literature review, interviews and assessments of patients, carers and health care providers, and through a trial comparing assessment by a specialist with management suggestions, guidance and access to telephone advice to that of usual care. Through interviews, questionnaire assessment and review of current health-care and social care arrangement, the investigators will assess the needs, provision of care and use of health-care resources, and their impact on patient and carer outcomes in different countries. National and regional databases will also be interrogated to identify current practice and use of healthcare resources and drug usage. A systematic literature review of the evidence for effective management strategies, analysis of the study data, and evaluation of change in outcomes following specialist review will provide the basis for recommendations in the management of late stage Parkinsonism. The investigators will also evaluate potentially useful outcome measures for use in this patient group. In addition to charting the needs and current care provision for late stage Parkinsonism in different European countries, its cost and effectiveness, and an analysis of health-care and social care predictors of improved outcome, the project will produce a platform for the assessment of patients with late stage Parkinsonism, their current treatment and care provision, as well as guidelines on the management of this late disease phase.

Trial Health

93
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
184

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started Sep 2014

Longer than P75 for not_applicable

Geographic Reach
6 countries

7 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 2014

Completed
24 days until next milestone

First Submitted

Initial submission to the registry

September 25, 2014

Completed
3 months until next milestone

First Posted

Study publicly available on registry

January 7, 2015

Completed
4.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

March 31, 2019

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

March 31, 2019

Completed
Last Updated

April 28, 2021

Status Verified

April 1, 2021

Enrollment Period

4.6 years

First QC Date

September 25, 2014

Last Update Submit

April 27, 2021

Conditions

Keywords

Parkinson's disease, Late stage

Outcome Measures

Primary Outcomes (1)

  • UPDRS-ADL part

    Disability measure

    6 months

Secondary Outcomes (9)

  • PDQ-8 or DEMQoL proxy

    6 months

  • Zarit carer burden scale

    6 months

  • Satisfaction with care Likert scale

    6 months

  • MMSE

    6 months

  • NPI

    6 months

  • +4 more secondary outcomes

Study Arms (2)

Specialist review

ACTIVE COMPARATOR

Specialist review with individually tailored treatment strategies suggested by specialist

Other: Specialist review

Care as usual

NO INTERVENTION

Care as usual

Interventions

Specialist review with individually tailored treatment strategies suggested by specialist

Specialist review

Eligibility Criteria

Age1 Year - 100 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Hoehn and Yahr stage (HY) IV or V in the "On"-state
  • Disease duration of at least 7 years

You may not qualify if:

  • Symptomatic Parkinsonism

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (7)

University of Bordeaux

Bordeaux, France

Location

University of Munich

Munich, Bavaria, 81377, Germany

Location

University of Marburg

Marburg, Germany

Location

Radboud university medical center

Nijmegen, 6500 HB, Netherlands

Location

Instituto de Medicina Molecular

Lisbon, 1649-028, Portugal

Location

Lund University

Lund, SE-22185, Sweden

Location

University College London

London, NW3 2PF, United Kingdom

Location

Related Publications (2)

  • Kruse C, Kretschmer S, Lipinski A, Verheyen M, Mengel D, Balzer-Geldsetzer M, Lorenzl S, Richinger C, Schmotz C, Tonges L, Woitalla D, Klebe S, Schrag A, Dodel R. Resource Utilization of Patients with Parkinson's Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study. Pharmacoeconomics. 2021 May;39(5):601-615. doi: 10.1007/s40273-021-01011-y. Epub 2021 Mar 19.

  • Balzer-Geldsetzer M, Ferreira J, Odin P, Bloem BR, Meissner WG, Lorenzl S, Wittenberg M, Dodel R, Schrag A. Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurol. 2018 Nov 5;18(1):185. doi: 10.1186/s12883-018-1184-3.

MeSH Terms

Conditions

Parkinson Disease

Condition Hierarchy (Ancestors)

Parkinsonian DisordersBasal Ganglia DiseasesBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesMovement DisordersSynucleinopathiesNeurodegenerative Diseases

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
NONE
Purpose
TREATMENT
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

September 25, 2014

First Posted

January 7, 2015

Study Start

September 1, 2014

Primary Completion

March 31, 2019

Study Completion

March 31, 2019

Last Updated

April 28, 2021

Record last verified: 2021-04

Locations