Improving Quality of Life for ALS Patients
potentiALS - A Multi-method Participatory Aproach to Identify Potentials in Improving Quality of Life Among Patients With Amyotrophic Lateral Sclerosis
University of Leipzig · NCT06441448
This study is trying to create a special therapy program to help improve the mental health and overall quality of life for people with ALS by involving patients, caregivers, and medical staff in the process.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 54 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | University of Leipzig (other) |
| Locations | 1 site (Leipzig, Saxony) |
| Trial ID | NCT06441448 on ClinicalTrials.gov |
What this trial studies
This observational study focuses on enhancing the quality of life for patients with Amyotrophic Lateral Sclerosis (ALS) by involving patients, caregivers, and medical staff in the development of a tailored psychotherapeutic program. The study aims to explore how ALS patients can actively participate in the research process despite the challenges posed by their rapidly progressing condition. By gathering insights from contributors, the study seeks to create a program that addresses the specific mental health needs of ALS patients, which are often overlooked in existing interventions.
Who should consider this trial
Good fit: Ideal candidates for this study are adults aged 18 and older who have been diagnosed with ALS and can communicate their thoughts and feelings.
Not a fit: Patients who are under 18, have severe cognitive impairments, or require immediate medical interventions like gastrostomy feeding may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved mental health and quality of life for ALS patients and their caregivers.
How similar studies have performed: While few psychosocial interventions have been successfully implemented for ALS patients, this approach is novel in its participatory focus and tailored methodology.
Eligibility criteria
Show full inclusion / exclusion 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
Where this trial is running
Leipzig, Saxony
- University Medical Center Leipzig — Leipzig, Saxony, Germany (RECRUITING)
Study contacts
- Principal investigator: Moritz Metelmann, PhD — Universitätsklinikum Leipzig
- Study coordinator: Moritz Metelmann, PhD
- Email: moritz.metelmann@medizin.uni-leipzig.de
- Phone: +49 341 97 24209
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.
Conditions: Amyotrophic Lateral Sclerosis, participatory aproach, quality of life, psychotherapeutic program