Malnutrition and Sarcopenia Among Primary Ciliary Dyskinesia

NCT07740538 | Not Yet Recruiting

• 1 other identifier: Primary Ciliary Dyskinesia
• Study Type: observational
• Target: 15
• Locations: 1 country
• Sites: 1

Brief Summary

The prevalence and causes of malnutrition and sarcopenia in children and adolescents with Primary ciliary dyskinesia (PCD) have not been sufficiently elucidated. The aim of this study is to investigate the prevalence of malnutrition and sarcopenia in children and adolescents with PCD.

Conditions

Primary Ciliary Dyskinesia (PCD)

Keywords

Malnutrition; Muscle strength; Sarcopenia; Respiratory function test; Primary Ciliary Dyskinesia

Outcome Measures

Primary Outcomes (1)

• Handgrip Muscle Strength in Participants

  Bilateral grip strength in children and adolescents with PCD will be measured in kgF using a hand dynamometer.

  From enrollment to the end of treatment at 1 year

Secondary Outcomes (20)

• Malnutrition risk score in Participants

  From enrollment to the end of treatment at 1 year

• Body Weight

  From enrollment to the end of treatment at 1 year

• Height

  From enrollment to the end of treatment at 1 year

• Body Mass Index

  From enrollment to the end of treatment at 1 year

• Waist circumference

  From enrollment to the end of treatment at 1 year

Study Arms (1)

Patient of Primary Ciliary Dyskinesia

The study will include children and adolescents with PCD aged 6 to 18 (n=15).

Other: Physical assessments of individuals

Interventions

Physical assessments of individuals OTHER

Participants will be evaluated in terms of nutritional status, anthropometric measurements (waist circumference, hip circumference, waist-to-height ratio, skinfold measurements) and body composition, pulmonary functions, anaerobic capacity, muscle strength.

Patient of Primary Ciliary Dyskinesia

Eligibility Criteria

• Age: 6 Years - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

The study will include children and adolescents aged 6-18 years with Primary Ciliary Dyskinesia (PCD).

You may qualify if:

• Unexplained neonatal respiratory distress, lateralization defect, productive cough, bronchiectasis, daily nasal congestion, and pansinusitis, as well as laboratory tests such as high-speed video microscopy, transmission electron microscopy, or genetic testing according to the European Respiratory Society diagnostic guidelines.
• Cooperative individuals,
• Individuals who have never smoked
• Willingness to participate in the study
• \. Voluntary participation in the study

You may not qualify if:

• Individuals with any acute, chronic, or systemic illness other than PCD
• Individuals who smoke or are quitting smoking
• Individuals who are not willing to participate in the study
• Individuals who are uncooperative

Sponsors & Collaborators

• Izmir Democracy University: lead

Study Sites (1)

Izmir Democracy University

Izmir, 35140, Turkey (Türkiye)

Location

Related Publications (3)

• Despotes KA, Zariwala MA, Davis SD, Ferkol TW. Primary Ciliary Dyskinesia: A Clinical Review. Cells. 2024 Jun 4;13(11):974. doi: 10.3390/cells13110974.

  PMID: 38891105 BACKGROUND

• McCoy J, Gatt D, Shaw M, Solomon M, Kritzinger F, Ratjen F. The Impact of Nutritional Status on Lung Function Trajectories in Pediatric Patients With Primary Ciliary Dyskinesia. Pediatr Pulmonol. 2026 Apr;61(4):e71634. doi: 10.1002/ppul.71634.

  PMID: 42001405 BACKGROUND

• Karavasiloglou N, Gkatzou V, Fernandez-Rodriguez A, Schwartz V, Goutaki M. Nutrition and growth of primary ciliary dyskinesia patients: a systematic review. Eur Respir Rev. 2026 May 27;35(180):260024. doi: 10.1183/16000617.0024-2026. Print 2026 Apr.

  PMID: 42203237 BACKGROUND

MeSH Terms

Conditions

Ciliary Motility Disorders; Malnutrition; Sarcopenia

Condition Hierarchy (Ancestors)

Respiratory Tract Diseases; Otorhinolaryngologic Diseases; Ciliopathies; Abnormalities, Multiple; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genetic Diseases, Inborn; Nutrition Disorders; Nutritional and Metabolic Diseases; Muscular Atrophy; Neuromuscular Manifestations; Neurologic Manifestations; Nervous System Diseases; Atrophy; Pathological Conditions, Anatomical; Pathological Conditions, Signs and Symptoms; Signs and Symptoms

Study Officials

• Kerim K Göküstün, Dr. Lecturer

  Izmir Democracy University

  STUDY DIRECTOR

• Gülşah BARĞI, Assoc. Dr.

  Izmir Democracy University

  PRINCIPAL INVESTIGATOR

• Aybüke Sena DEMİR, MSc.

  Izmir Democracy University

  PRINCIPAL INVESTIGATOR

• Ece OCAK, Dr.

  University of Health science

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Kerim Kaan K GÖKÜSTÜN, Dr. Lecturer

CONTACT

+90 232 299 07 39; kerimkaangokustun@hotmail.com

Gülşah BARĞI, Assoc. Dr.

CONTACT

+90 232 299 07 39; gulsahbargi35@gmail.com

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Target Duration: 6 Months
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: July 23, 2026
• First Posted: July 31, 2026
• Study Start (Estimated): August 3, 2026
• Primary Completion (Estimated): July 1, 2027
• Study Completion (Estimated): July 1, 2028
• Last Updated: July 31, 2026

Record last verified: 2026-07

Data Sharing

• IPD Sharing: Will not share

Locations

TU (1)