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

NCT ID: NCT07223489

Last Updated: 2025-10-31

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2025-10-10

Study Completion Date

2026-12-30

Brief Summary

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

Detailed Description

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Conditions

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Spinal Muscular Atrophy (SMA)

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

RETROSPECTIVE

Interventions

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Telephone Interview

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

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* SMA diagnosis, age greater than or equal to 18 years

Exclusion Criteria

* Deceased
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Medstar Health Research Institute

OTHER

Sponsor Role lead

Responsible Party

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Nicholas Streicher

Physician

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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MedStar Health Research Institute

Washinton, District of Columbia, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Gabrielle Edwards, BS

Role: CONTACT

Phone: 2022219998

Email: [email protected]

Facility Contacts

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Gabrielle Edwards, BS

Role: primary

Other Identifiers

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ML46436

Identifier Type: -

Identifier Source: org_study_id