National registry for patients with alpha-1-antitrypsin deficiency
Czech Alpha-1 Antitrypsin Deficiency Registry, the National Observational Study.
This study collects health information from people with alpha-1-antitrypsin deficiency to better understand how the condition affects them over time.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 300 (estimated) |
| Sex | All |
| Sponsor | Thomayer University Hospital Academic / other |
| Locations | 1 site (Prague, Czech Republic) |
| Trial ID | NCT05178277 on ClinicalTrials.gov |
What this trial studies
The AATD Registry is a non-interventional multicenter observational study that collects and analyzes clinical data from patients diagnosed with alpha-1-antitrypsin deficiency, a genetic disorder that can lead to severe lung and liver diseases. This registry aims to provide a comprehensive view of the condition's impact on the Czech population by following patients longitudinally over time. It includes individuals with varying degrees of organ impairment and seeks to enhance awareness and understanding of this hereditary disease among healthcare professionals.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with alpha-1-antitrypsin deficiency, regardless of their age or the severity of their condition.
Not a fit: Patients who do not have alpha-1-antitrypsin deficiency or those who refuse to participate in the registry will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could improve the understanding and management of alpha-1-antitrypsin deficiency, leading to better patient outcomes.
How similar studies have performed: While this registry approach is common in chronic disease management, the specific focus on alpha-1-antitrypsin deficiency in the Czech population is relatively novel.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with alpha-1-antitrypsin deficiency Exclusion Criteria: * Patient disagreement with inclusion in the study
Where this trial is running
Prague, Czech Republic
- Thomayer university hospital — Prague, Czech Republic, Czechia (Recruiting)
Study contacts
- Principal investigator: Jan MD Chlumsky, PhD — Thomayer University Hospital
- Study coordinator: Katerina Kusalova, Ing
- Email: kusalova@biostatistika.cz
- Phone: +420723949465
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.