# The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs

> **NCT04228718** · — · COMPLETED · sponsor: **Marmara University** · enrollment: 34 (actual)

## Conditions studied

- Spinal Muscular Atrophy
- Caregiver Burden

## Interventions

- **BEHAVIORAL:** Zarit Burden Interview Scale
- **BEHAVIORAL:** Family Needs Survey (FNS)
- **OTHER:** Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)
- **OTHER:** Hammersmith Functional Motor Scale Expanded (HMFSE)

## Key facts

- **NCT ID:** NCT04228718
- **Lead sponsor:** Marmara University
- **Sponsor class:** OTHER
- **Phase:** —
- **Study type:** OBSERVATIONAL
- **Status:** COMPLETED
- **Start date:** 2019-07-01
- **Primary completion:** 2020-02-28
- **Final completion:** 2020-05-01
- **Target enrollment:** 34 (ACTUAL)
- **Last updated:** 2020-05-14


## Primary source

ClinicalTrials.gov registry: https://clinicaltrials.gov/study/NCT04228718

## Citation

> US National Library of Medicine, ClinicalTrials.gov registration NCT04228718, "The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs". Retrieved via AI Analytics 2026-06-24 from https://api.ai-analytics.org/clinical/NCT04228718. Licensed CC0.

---

*[Clinical trials dataset](/datasets/clinical-trials) · CC0 1.0*