Exploring patient and caregiver experiences with ALS care in Germany
Patients' and Caregivers' Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany
This study is looking to understand how patients with ALS and their caregivers feel about the care they receive in Germany, especially regarding support beyond just medical treatment.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 500 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Technische Universität Dresden Academic / other |
| Locations | 1 site (Dresden, Saxony) |
| Trial ID | NCT06418646 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather insights from patients with amyotrophic lateral sclerosis (ALS) and their caregivers regarding the multidimensional care they receive in Germany. Through a cross-sectional, multicentre survey, the study will assess perceptions of medical care, focusing on psychosocial support and palliative aspects. The research seeks to identify gaps in care, particularly in non-medical services that are crucial for managing the complex needs of ALS patients and their caregivers.
Who should consider this trial
Good fit: Ideal candidates for this study are adults aged 18 and older diagnosed with at least 'possible ALS' according to El-Escorial criteria.
Not a fit: Patients with significant behavioral or mental performance impairments that affect their ability to provide consent may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved care strategies and support services for ALS patients and their caregivers.
How similar studies have performed: While this study addresses a critical area of care for ALS patients, similar approaches have shown varying degrees of success in other regions, indicating both the need for and potential impact of this research.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * patients with at least "possible ALS" according to El-Escorial-criteria * at least 18 years old * no impairments of behaviour or mental performance relevant to everyday life that limits the ability to make judgments or give consent (e.g. as part of a comorbid FTD) Exclusion Criteria: * impairments of behaviour or mental performance relevant to everyday life that limits the ability to make judgments or give consent (e.g. as part of a comorbid FTD)
Where this trial is running
Dresden, Saxony
- University Hospital Carl Gustav Carus at Technische Universität Dresden — Dresden, Saxony, Germany (Recruiting)
Study contacts
- Principal investigator: René Günther, PD Dr. — University Hospital Carl Gustav Carus at Technische Universität Dresden
- Study coordinator: Katharina Linse, Dr.
- Email: katharina.linse@ukdd.de
- Phone: 004935145819792
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.