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Framework for Registries and Medical Databases

Welcome to the ESID Registry Network Reporting Tool public webpage!

The data shown is collected via the central ESID system, UKPID registry (UK) and IPINET (ITALY)

We are happy

to count 30195 registry's patients.

of these 3099 patients need to be verified.

Furthermore, we count 3228 old registry's patients exclusively.

Thus, we end up with 33423 patients in total.



The following figures show numbers based on 27096 patients of the new registry.

Database from: 09 December 2019.

Living Status

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Patients according to their living status

Long description.

No description available.

Structure.

Bar chart with 4 bars.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying number of patients.

Chart graphic.

Patients according to their living status Created with Highcharts 6.2.0

Patients by age classes

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Patients by age classes. N = 25384

Long description.

No description available.

Structure.

Bar chart with 2 data series.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying % of patients.

Chart graphic.

Patients by age classes Created with Highcharts 6.2.0 Lithuania age >= 18 : 58 (92%) age < 18 : 5 (8%)

We calculate the age of a patient by computing the distance between date of last news minus date of birth.

Ig Replacement

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Ig Replacement. routes

Long description.

No description available.

Structure.

Bar chart with 5 bars.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying number of patients.

Chart graphic.

Ig Replacement Created with Highcharts 6.2.0
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Ig Replacement. place

Long description.

No description available.

Structure.

Bar chart with 7 bars.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying number of patients.

Chart graphic.

Ig Replacement Created with Highcharts 6.2.0

PID distribution

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Main categories. ESID

Long description.

No description available.

Structure.

Pie chart with 9 slices.

Chart graphic.

Main categories Created with Highcharts 6.2.0

Gender Distribution

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Gender Distribution of ESID. including patients documented as deceased

Long description.

No description available.

Structure.

Bar chart with 4 data series.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying Total patients.

Chart graphic.

Gender Distribution of ESID Created with Highcharts 6.2.0

Prevalence Map

Created with Highmaps 6.2.0 Prevalence Map Living patients per 100000 inhibitants (N = 22859) 8.07 8.07 9.24 9.24 12.84 12.84 1.22 1.22 3.27 3.27 4.96 4.96 3.33 3.33 2.75 2.75 6.45 6.45 1.31 1.31 0.29 0.29 3.35 3.35 3.40 3.40 1.48 1.48 6.12 6.12 5.86 5.86 1.94 1.94 0.07 0.07 2.98 2.98 0.98 0.98 0.16 0.16 2.03 2.03 2.05 2.05 2.13 2.13 0.11 0.11 0.45 0.45 0.01 0.01 0 5 10 15 © ESID 2019 Ireland population: 6378000 documented alive patients: 124
  • Note: The map shows the minimal prevalence rates calculated from the number of documented PID patients in the ESID Database.

HSCT

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HSCT

Long description.

No description available.

Structure.

Bar chart with 3 bars.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying number of patients.

Chart graphic.

HSCT Created with Highcharts 6.2.0

Gene Therapy

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Gene Therapy

Long description.

No description available.

Structure.

Bar chart with 3 bars.
The chart has 1 X axis displaying categories.
The chart has 1 Y axis displaying number of patients.

Chart graphic.

Gene Therapy Created with Highcharts 6.2.0

Imprint

The European Society for Immunodeficiencies (ESID) is a non-profit organization whose main objectives are to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with primary immunodeficiency diseases and also to promote research on causes, mechanisms and treatment of these disorders. ESID was established as an informal group in 1983 and became a society in 1994.

The ESID Society is registered with the Chamber of Commerce in Leiden, the Netherlands ("Kamer van Koophandel Rijnland") with the number 40448576.

While we have made every effort to ensure that the information contained in this site has been obtained from reliable sources ESID is not responsible for any errors or omissions, or for the results obtained from the use of this information. All information in this site is provided "as is", with no guarantee of completeness, accuracy, timeliness or of the results obtained from the use of this information.

ESID respects the privacy of users of this site.

The distribution of any content of this webpage is not allowed unless ESID gave you permission.

Data on our website is computed based on our registry database and merged with statistics of affiliated centers - errors reserved!

Certain information such as type of browser used, type of system software and domain name of the provider used, information that is not personal is routinely saved in a protocol file by the ESID web server for internal use only.

This website contains links to other websites. ESID makes no representations as to the accuracy or any other aspect of information contained in other websites.

Responsible for the contents of these pages:

Mikko Seppänen
Chief Physician
MD, PhD, Specialist in Internal Medicine and Infectious Diseases, Adjunct Professor
University HUS Hospital, Children and Helsinki Adolescents, Rare Disease Center
Majakka, P.O.Box 281, 00029 HUS | Stenäckinkatu 11, Helsinki
E-mail: mikko.seppanen@hus.fi
Tel.: +358 50 4279606