potentiALS - Quality of Life Among Patients With Amyotrophic Lateral Sclerosis

Launched by UNIVERSITY OF LEIPZIG · May 28, 2024

Keywords

ClinConnect Summary

The potentiALS trial is studying how to improve the quality of life for people with Amyotrophic Lateral Sclerosis (ALS), a serious and progressive condition that affects muscle control. The researchers want to understand how to involve patients, their caregivers, and healthcare professionals in creating better mental health support programs specifically for those living with ALS. This includes asking them what types of support they need and how those programs should be designed to be most effective.

To participate in this study, individuals must be at least 18 years old, have a confirmed diagnosis of ALS, and be able to communicate their thoughts and feelings in German. They should also expect to contribute to the research process by sharing their experiences and opinions. The goal is to gather valuable insights that will help develop targeted support programs for ALS patients in the future. The study is currently recruiting participants, and feedback from everyone involved will help shape the next steps in improving mental health resources for this community.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • patients met criteria for definite/laboratory-supported probable/clinically probable/possible familial or sporadic ALS (diagnostically synonymous with MND) or MND variants (progressive muscular atrophy or primary lateral sclerosis according to the revised El Escorial criteria
• • ≥ 18 years old
• • fluent in German
• • ability to communicate thoughts and feelings
• • ability to provide written consent
• • anticipated remaining lifespan of ≥ 9 months.
• Exclusion Criteria:
• • under 18 years old
• • had a clinical need for gastrostomy feeding or non-invasive ventilation
• • had a diagnosis of dementia
• • inability to consent

Trial Officials