Amyotrophic Lateral Sclerosis Registry Rhineland-Palatinate

There is a lack of prospective and population-based epidemiological data on amyotrophic lateral sclerosis in Germany so far. The purpose of this registry is to investigate the incidence, course and phenotypic variety of ALS in Rhineland-Palatinate, a South-West German state of about 4 million inhabitants.

Completed

Looking for future studies?

Notify Me

Key information

Conditions

Amyotrophic Lateral Sclerosis Central Nervous System Diseases Metabolic Diseases Motor Neuron Disease Nervous System Diseases Neurodegenerative Diseases Neuromuscular Diseases Nutritional and Metabolic Diseases Proteostasis Deficiencies Spinal Cord Diseases TDP-43 Proteinopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Dept. of Neurology, Klinikum Ludwigshafen

Ludwigshafen, 67063, Germany

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

diagnosis of amyotrophic lateral sclerosis according to revised El Escorial criteria
minimum of 18 years
minimum of 6 months of residency in Rhinelnad-Palatinate

Exclusion criteria

patients below 18 years
ALS patients outside Rhineland-Palatinate

Treatment and study plan

Primary outcomes

Death

Time frame: an average of 3 years

death of participating ALS patients independent of the cause of death

Secondary outcomes

Tracheostomy

Time frame: an average of 3 years

tracheostomy in ALS patients following respiratory failure

Other outcomes

Gastrostomy

Time frame: an average of 3 years

gastrostomy of ALS patients following weight loss and/or swallowing problems with aspiration

Sponsors and collaborators

Lead sponsor

Klinikum Ludwigshafen

Other

Registry information

Important dates

Study start: 2009
Primary completion: 2012
Study completion: 2015
First posted: Oct 7, 2013
Registry last updated: May 19, 2016

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed