Overview

This report summarizes a Brazilian survey of specialized centers caring for patients with primary ciliary dyskinesia (PCD). The analysis is descriptive and center-level. It includes confirmed PCD patients, clinically suspected PCD patients, diagnostic method availability, and geographic distribution of centers.

The dataset includes 20 responding centers across 12 Brazilian states.

Measure Value
Centers 20
States 12
Confirmed PCD patients 205
Clinically suspected patients 364
Total confirmed + suspected 569

Patient Volume by Center

The figure below shows confirmed and clinically suspected PCD patients in each center. Bars are ordered by total patient volume.

Center City State Age group served Confirmed PCD Clinical suspicion Total
Universidade Estadual de Campinas (Unicamp) Campinas SP Children and adolescents 25 60 85
InCor - USP (adultos) São Paulo SP Adults 50 30 80
Hospital de Messejana - Dr Carlis Alberto Studart Gomes Fortaleza CE Adults 0 62 62
Instituto da Criança e do Adolescente HCFMUSP São Paulo SP Children and adolescents 25 25 50
Hospital São Lucas da PUCRS Porto Alegre RS All ages 7 40 47
Hospital do Pulmão Blumenau SC All ages 0 40 40
Instituti nacional da Saúde da Mulher, Criança e adolescente Fernandes Figueira - IFF-FIOCRUZ Rio de Janeiro RJ Children and adolescents 17 18 35
Hospital de Clinicas de Porto Alegre - adultos Porto Alegre RS Adults 4 20 24
Hospital Infantil Albert Sabin Fortaleza CE Children and adolescents 2 18 20
Hospital Infantil João Paulo II Belo Horizonte MG Children and adolescents 8 10 18
HC UFG Goiânia GO All ages 9 7 16
Hospital Estadual Infantil Nossa Senhora da Glória Vitória ES Children and adolescents 5 11 16
Hospital Universitário Professor Edgard Santos Salvador BA Children and adolescents 12 2 14
HC UFPR Curitiba PR Children and adolescents 7 7 14
IMIP - Instituto de Medicina Integral Professor Fernando Figueira Recife PE All ages 10 0 10
Hospital da Criança de Brasilia José Alencar Brasília DF Children and adolescents 9 0 9
HCPA Porto Alegre RS Children and adolescents 3 6 9
Hospital das Clinicas- UFMG Belo Horizonte MG Children and adolescents 2 7 9
Unicamp Campinas SP Adults 8 0 8
Hospital da criança santo antonio Porto Alegre RS Children and adolescents 2 1 3

Geographic Distribution

Circle area is proportional to the total number of confirmed plus clinically suspected PCD patients in each center. Centers in the same city were slightly offset to keep overlapping circles visible.

Diagnostic Method Availability

The next figure summarizes the availability status of each diagnostic method as the percentage of centers reporting each category.

The center-by-method matrix shows the reported operational status for every center and diagnostic modality.

Method Status Centers Percent
Electron microscopy On-site 2 10.0%
Electron microscopy Partnered service 5 25.0%
Electron microscopy Not available 13 65.0%
Genetics On-site 4 20.0%
Genetics Partnered service 8 40.0%
Genetics Being implemented 2 10.0%
Genetics Not available 6 30.0%
Immunofluorescence On-site 1 5.0%
Immunofluorescence Partnered service 7 35.0%
Immunofluorescence Not available 12 60.0%
Nasal NO On-site 3 15.0%
Nasal NO Partnered service 4 20.0%
Nasal NO Being implemented 2 10.0%
Nasal NO Not available 11 55.0%
Sweat test On-site 13 65.0%
Sweat test Partnered service 5 25.0%
Sweat test Being implemented 1 5.0%
Sweat test Not available 1 5.0%
Videomicroscopy On-site 1 5.0%
Videomicroscopy Partnered service 3 15.0%
Videomicroscopy Being implemented 1 5.0%
Videomicroscopy Not available 15 75.0%

Planned Diagnostic Implementation

The table below summarizes diagnostic methods that centers reported planning to implement in the next two years.

Method Centers Percent
Genetics 9 45.0%
Nasal NO 9 45.0%
Immunofluorescence 3 15.0%
Electron microscopy 2 10.0%
Videomicroscopy 1 5.0%

Nasal Brushing for Immunofluorescence

Interest in nasal brushing sample referral Centers Percent
Yes 20 100.0%