Understanding ALS: A New Dataset for Research
Author Information
Author(s): Suzanne Segerstrom, Edward Kasarskis
Primary Institution: Oregon State University
Hypothesis
The study aims to characterize the psychosocial and physical natural history of ALS and the interactions between them.
Conclusion
The Seattle ALS Patient Profile Database provides a comprehensive resource for studying ALS and its impact on patients and their partners.
Supporting Evidence
- The dataset includes psychological measures such as coping and emotional expression.
- Participants were interviewed in their homes to gather detailed information.
Takeaway
This study created a big database about ALS patients and their families to help scientists learn more about the disease.
Methodology
Participants and partners were interviewed every 3 months for up to 18 months, with various psychological and health measures collected.
Limitations
Much of the data has never been analyzed or reported.
Participant Demographics
ALS patients aged 26-83 years and their partners aged 20-79 years.
Digital Object Identifier (DOI)
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