Public AttitudesTowards SMA and DMD Awareness, Newborn and Carrier Screening and Physiotherapy Practices

NCT05110885 | Unknown

• 1 other identifier: MSLN1602610
• Study Type: observational
• Target: 200
• Locations: 0 countries
• Sites: N/A

Brief Summary

The addition of SMA and DMD muscle diseases to newborn screening and premarital carrier screening has been controversial. In this study, researchers aim to measure the awareness level of SMA and DMD muscle diseases of individuals living in Turkey and to obtain information about their attitudes towards newborn and carrier screening and physiotherapy practices. Thus, this study aimed to determine the factors that affect people's views on this subject.

Conditions

Spinal Muscular Atrophy; Duchenne Muscular Dystrophy; Healthy Individuals

Keywords

Awareness; Duchenne muscular dystrophy; Spinal muscular atrophy; Physiotheraphy; Genetic Carrier Screening; Prenatal Diagnosis

Outcome Measures

Primary Outcomes (3)

• Awareness level of community on the SMA and DMD diseases.

  Questionnaire

  Day 1.

• Attitudes of community towards SMA/DMD newborn screening and carrier screening.

  Questionnaire

  Day 1.

• Public opinion towards the effectiveness of physiotherapy and rehabilitation on DMD/SMA.

  Questionnaire

  Day 1.

Study Arms (1)

Individuals living in Turkey

Individuals from different regions of Turkey who meet inclusion criteria

Other: Questionnaire

Interventions

Questionnaire OTHER

A questionnaire prepared by the researchers will be presented to the group.

Individuals living in Turkey

Eligibility Criteria

• Age: 18 Years - 50 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Individuals from different regions of Turkey who meet inclusion criteria

You may qualify if:

• All man and women 18-50 years old
• Volunteering to participate in the study
• Live in Turkey
• Being able to read and understand survey questions

You may not qualify if:

• Refusal to participate
• Cognitive impairment preventing understanding of the questionnaire and self-reporting

Sponsors & Collaborators

• Bahçeşehir University: lead

MeSH Terms

Conditions

Muscular Atrophy, Spinal; Muscular Dystrophy, Duchenne

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Spinal Cord Diseases; Central Nervous System Diseases; Nervous System Diseases; Motor Neuron Disease; Neurodegenerative Diseases; Neuromuscular Diseases; Muscular Dystrophies; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Genetic Diseases, X-Linked; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Central Study Contacts

Mislina Açoğlu

CONTACT

0539 352 3247; msln.acgl@gmail.com

Çiçek Günday

CONTACT

0507 188 8848; cicek.gunday@istinye.edu.tr

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principle Investigator

Study Record Dates

• First Submitted: October 8, 2021
• First Posted: November 8, 2021
• Study Start: November 1, 2021
• Primary Completion: January 1, 2022
• Study Completion: January 1, 2022
• Last Updated: November 10, 2021

Record last verified: 2021-11