ArticleMuscle & nerve2014
The National ALS Registry: a recruitment tool for research.
Article in Muscle & nerve, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed.
- Comparison of Demographics: National Amyotrophic Lateral Sclerosis Registry and Clinical Trials Data.Journal of racial and ethnic health disparities · 2025Article
- Early life events may be the first steps on the multistep path to amyotrophic lateral sclerosis.Scientific reports · 2024Article
- Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis.American journal of speech-language pathology · 2023Article
- Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry's Research Notification Mechanism.Journal of medical Internet research · 2021Article
- Digital Dementia Registry Bavaria-digiDEM Bayern: study protocol for a multicentre, prospective, longitudinal register study.BMJ open · 2021Article
- Patients with sporadic and familial amyotrophic lateral sclerosis found value in genetic testing.Molecular genetics & genomic medicine · 2018Article
- Are There Modifiable Environmental Factors Related to Amyotrophic Lateral Sclerosis?Frontiers in neurology · 2018Article
- Article
- Research Registries: A Tool to Advance Understanding of Rare Neuro-Ophthalmic Diseases.Journal of neuro-ophthalmology : the official journal of the North American Neuro-Ophthalmology Society · 2016Review
- Designing an Internationally Accessible Web-Based Questionnaire to Discover Risk Factors for Amyotrophic Lateral Sclerosis: A Case-Control Study.JMIR research protocols · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
introductionSubject recruitment is critical for understanding fatal diseases like ALS, however linking patients with researchers can be challenging. The U.S. population-based National ALS Registry allows recruitment of persons with ALS (PALS) for research opportunities.
methodsThe Registry's Research Notification Mechanism was used to recruit PALS aged ≥21 years; participants completed a Web-based epidemiologic survey. PALS (n = 2,232) were sent an email describing the study, and 268 surveys were completed.
resultsThe mean age (± SD) of eligible participants was 57.7 ± 9.3 years for men and 61.5 ± 8.9 for women. Most were men (63%) and Caucasian (92%). Of 256 potentially eligible participants, 37.5% (n = 96) returned an authorization to disclose protected health information. ALS was confirmed for 94% (83/88) from physician responses.
conclusionsThis analysis demonstrates the National ALS Registry's usefulness in recruiting PALS for research. This recruitment source can potentially foster the discovery of better treatment options and therapies, and of prevention strategies.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.