Diagnostic Journey, Patient Experience, and Disparities in the Treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System

Part of paid clinical trials in Washinton, District of Columbia.

Sponsor
Medstar Health Research Institute
Study ID
NCT07223489
Status
Recruiting
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Conditions

  • Spinal Muscular Atrophy (SMA)

Eligibility Criteria

Sex
ALL
Age
18 Years - N/A
Healthy Volunteers
Not accepted

Interventions

  • Telephone Interview — BEHAVIORAL
    Telephone interviews to gather qualitative data on SMA patients' diagnostic journey, access to treatment and barriers encountered, understanding of their disease, and quality of life measures

Study Details

Evaluate the diagnostic journey, patient experience, and disparities in the treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System.

Key Dates

Start date
Oct 10, 2025
Status verified
Jan 2026
Primary completion
Jun 30, 2026
Completion
Dec 30, 2026

Study Design

Enrollment
200 participants (estimated)

Primary Outcome Measure

Proportion of SMA patients not receiving disease-modifying therapy and categorical causes for non-treatment based on structured patient/caregiver survey responses [ Time Frame: 2020-2025 ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
MedStar Health Research InstituteWashintonDistrict of Columbia20010
Gabrielle Edwards, BS
[email protected]
2022219998
Nicholas Streicher, MD (PRINCIPAL_INVESTIGATOR)

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MedStar Health Research Institute· Washinton, DC

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