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Research on the Trajectory of Fear of Disease Progression and Corresponding Care Strategies in Patients with Amyotrophic Lateral Sclerosis Based on Journey Mapping

Research on the Trajectory of Disease Progression Fear and Care Strategies in Patients with Amyotrophic Lateral Sclerosis Based on Journey Mapping

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
ChiCTR
Registry ID
ChiCTR2600117595
Enrollment
Unknown
Registered
2026-01-27
Start date
2026-01-27
Completion date
Unknown
Last updated
2026-02-02

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Amyotrophic Lateral Sclerosis

Interventions

Observation group:None

Sponsors

Shanghai Yangzhi Rehabilitation Hospital (Shanghai Sunshine Rehabilitation Center)
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

Inclusion criteria: 1. Meets the diagnostic criteria of the "Chinese Guidelines for the Diagnosis and Treatment of Amyotrophic Lateral Sclerosis"; 2. Conscious; 3. No cognitive impairment; 4. No hearing comprehension impairment; 5. Willing to participate in this study.

Exclusion criteria

Exclusion criteria: 1. Having severe physical illnesses, such as malignant tumors or impaired liver or kidney function; 2. Currently participating in other interventional research studies; 3. Mental illness; 4. Cognitive impairment.

Design outcomes

Primary

MeasureTime frame
Fear of Progression;Family Care Index;Medical Outcomes Study Social Support;Resilience;—

Secondary

MeasureTime frame
ALS Functional Rating Scale Scores;Illness Perception;Medical Coping Modes;—

Countries

China

Contacts

Public ContactMao Yanjun

Shanghai Yangzhi Rehabilitation Hospital (Shanghai Sunshine Rehabilitation Center)

maoyanjunsunny@163.com+86 21 3773 0011

Outcome results

None listed

Source: ChiCTR (via WHO ICTRP) · Data processed: Feb 7, 2026