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Clinical Trials/DRKS00012803
DRKS00012803CompletedNot Applicable

A mixed methods study to analyse the requirements for a technical assistance system for ALS-patients

Charité, Ambulanz für ALS und andere Motoneuronenerkrankungen0 sites100 target enrollmentStarted: August 14, 2017Last updated:
Conditions

Trial Snapshot

Phase
Not Applicable
Status
Completed
Sponsor
Enrollment
100

Study Overview

Brief Summary

No summary available.

Study Design

Study Type
Observational

Eligibility Criteria

Ages
18 Years to one (—)
Sex
All

Inclusion Criteria

  • aged 18 and above,
  • clinical diagnosis of ALS (according to El Escorial criteria).
  • Informal caregivers:
  • aged 18 and above;
  • persons closely related to the patient, who belong to his or her family or extended environment and substatially involved in the patient care.
  • Formal caregivers:
  • professionally trained caregiver or
  • caregiver assistant, experienced in ALS patient care.

Exclusion Criteria

  • lack of written consent,
  • lack of willingness to save and transfer pseudomynized health data,
  • incapacitated people due to cognitive deficits (at least a medium-level collateral dementia),
  • lack of written consent of the legal representative (if existent).
  • Informal caregivers:
  • lack of written consent,
  • presence of a heritable psychological stress disorder which makes an additional burden due to the interviews inacceptable.
  • Formal caregivers:
  • lack of written consent.

Investigators

Sponsor
Charité, Ambulanz für ALS und andere Motoneuronenerkrankungen

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