Exploring Motivation and Emotional Experience in Observational Research for Individuals at Risk of ALS/FTD Spectrum Disorders
Participation in observational research helps address unmet emotional and medical needs for asymptomatic individuals who are at risk of ALS-FTD spectrum disorders. However, some of these needs are beyond the scope of research, highlighting the need for new models of clinical care for at-risk individuals.
Authors
- Christine Stanislaw (ORCID: https://orcid.org/0000-0002-5191-6479)
- Laynie Dratch (ORCID: https://orcid.org/0000-0002-2179-3199)
- Niharika Jadeja (ORCID: https://orcid.org/0009-0008-5892-1554)
- Lauren Lichten (ORCID: https://orcid.org/0000-0003-3733-1201)
- C. Fournier
- Nicole Ali
- Daniel Barvin
Institutions
- Emory University (US)
- Legacy Health (US)
- Pennsylvania Academic Library Consortium (US)
- University of Pennsylvania (US)
Publication Details
- Journal
- Neurology Clinical Practice
- Published
- 2025-10-02
- DOI
- https://doi.org/10.1212/cpj.0000000000200538
- Citations
- 1
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 3.12