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RESEARCH_CDG
  • About
  • Research
    • WP1 executive commitee
    • WP2 CDG Diagnosis
    • WP3 CDG Genetics
    • WP4 Biology to guide CDG therapies >
      • GlycoImmunology >
        • ImmunoCDGQ
        • ImmunoQ
      • Cardioendocrine
      • Liver
      • Neurology
      • Hematology
      • Ophtalmology
      • Skeletal Disease
    • WP5 SYSTEMS BIOLOGY AND BIOINFORMATICS >
      • Biomedical
      • Computational
      • Metabolomics
      • Systems Biology
    • WP6 CLINICAL AND THERAPEUTIC CDG RESEARCH >
      • Patients
      • Pharmacological
      • CDG ​Portugal
    • WP7 CDG psychology and educational research >
      • Psychology
      • Educational
      • Language
    • WP8 CDG Lobby and Representation >
      • Patient-Centered Care
      • Patient Representative
    • WP9 Communication and Dissemination >
      • Eva Morava
      • Jaak Jaeken
      • Paula Videira
      • Andrea Berarducci
      • David Cassiman
      • Bobby Ng
      • Sandro Bellinzis
    • WP10 Donations & Funds
    • WP11 Collaborations and Open positions
    • WP12 CDG & Allies Community Advisory Committee
  • Resources
  • Donate
  • CDG Maps
  • Blog

iMMUNOLOGY CDG Questionnaire (ImmunoCDGQ)

​FOR ALL CDG PATIENT & CAREGIVERS
7th Liliana Scholarship - English.pdf
File Size: 51 kb
File Type: pdf
Download File

NEW DEADLINE: 20TH JANUARY 2019

Fostering knowledge in a patient-centered manner

Welcome to a research project made with and for YOU!

If you have any doubt, please contact: rab.francisco@campus.fct.unl.pt  and /or (+351) 925718128

"If you want to go fast, go ALONE
If you want to go far, go TOGETHER!"
                                                                                                  - African proverb -

What?


The Immunology CDG Questionnaire (ImmunoCDGQ) allows you to contribute to advance knowledge on immune system-related problems in CDG  with a CLICK!
Watch the video below and learn all about the ImmunoCDGQ!

Who?

For Whom?


Institutions
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Researchers/Clinicians
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Family board of reviewers
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Why should YOU participate?

See and listen WHY YOU should become our Research Partner!
La clinicienne et maman CDG Oriane Hostache explique pourquoi elle pense que les patients et les soignants CDG devraient prendre part à ce projet de recherche unique.
Dr Dorinda da Silva tells you why she thinks the ImmunoCDGQ is an important research project that you should join!
La mamma e avvocato Tatiana Rijoff spiega perché pensa che i pazienti e i caregivers CDG dovrebbero prendere parte a questo progetto di ricerca unico e molto importante -Questionario sull'Immunologia CDG per Pazientes & Caregivers "ImmunoCDGQ".
Sandra, la mama de Martim, explica como  TODAS las familias CDG puden contribuir para avanzar la investigación en el campo de la inmunología. Animate y participa!
Morgan, a truly amazing CDG champion shares her views on the importance of the CDG Community participating in this unique project - the Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.

QUESTIONNAIRE/QUESTIONÁRIO/CUESTIONARIO

FINAL DEADLINE: 20TH JANUARY 2019
Each botton below gives you access to the ImmunoCDGQ online questionnaire.
Choose your language:
ARABIC
ENGLISH
PORTUGUÊS
ESPAÑOL
FRANÇAIS
ITALIANO

Helping you feel prepared: Supportive documents

Information  for Participants: All you need to know
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English version
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Versão Portuguesa
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Versión Española
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Versione Italiana
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Version française

Interactive Resources 
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A Prezi presentation about Immunology Basics to help you learn about the immune system in a fun way. It can take 15-20 min to watch.
Find it HERE
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An interactive tip guide for a smooth participation in the ImmunoCDGQ.
It clarifies many tecnhical aspects and possible tricky subjects.
Find it HERE

Patient-Friendly Document: Immunological involvement in Congenital Disorders of Glycosylation (CDG) - A community-friendly document
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English version
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Versão Portuguesa
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Versión Española​

10 Days = 10 CDG Immunology Facts

These are 11 posts (including an introduction post) about immune  system involvement in CDG. Sugars are present across various cells and proteins of the immune system (e.g sugars are present in antibodies). As CDG patients have defective sugar trees, their immune responses may be altered as well.

This campaign aims to empower and inform families on this topic. It touches on basic immunology concepts and then goes into more depth about CDG-related topics.

Scientific revision of the literature: Immunological aspects of congenital disorders of glycosylation (CDG): a review
You can find the abstract HERE  and order the complete article HERE.

Mini GLOSSARIES about Immunology and CDG
ENGLISH
Mini GLOSSARIES
GLOSSARY Nº 1: Immune System
GLOSSARY Nº5: Types of Infection
GLOSSARY Nº2: Immunological tests
GLOSSARY Nº6: Agents of infection

PORTUGUÊS
Mini GLOSSÁRIOS
GLOSSÁRIO Nº1: Sistema Imunitário
GLOSSÁRIO Nº5: Tipos de infecções
GLOSSÁRIO Nº2: Testes imunológicos
GLOSSÁRIO Nº6: Agentes de infeção

ESPAÑOL
Mini GLOSARIOS
GLOSSARY Nº3: Immune Alterations
GLOSSARY Nº7: Autoimmune disease
GLOSSARY Nº4: Nutritional supplementation therapies in CDG
GLOSSARY Nº8: Allergy

GLOSSÁRIO Nº3: Alterações imunológicas
GLOSSÁRIO Nº7: Doença autoimune​
GLOSSÁRIO Nº4: Suplementação nutricional em CDG
GLOSSÁRIO Nº8: Alergia

GLOSARIO Nº1: Sistema Inmune
GLOSARIO Nº5: Tipos de infeccion
GLOSARIO Nº2: Pruebas inmmunologicas
GLOSARIO Nº6: Agentes Infecciosos
GLOSARIO Nº3: Alteraciones inmunologicas
GLOSARIO Nº7: Enfermedades autoinmunes
GLOSARIO Nº4: Terapias Nutritionales en CDG
GLOSARIO Nº8: Alergia

​ITALIANO
Mini GLOSSARIOS
GLOSSARIO Nº1: Sistema immunitario
GLOSSARIO Nº5:Tipi di infezioni
GLOSSARIO Nº2: Test immunologici
GLOSSARIO Nº6: Agenti che causano infezioni
GLOSSARIO Nº3: Alterazioni del sistema immunitario
GLOSSARIO Nº7: Malattie autoimmuni
GLOSSARIO Nº4: Integratori alimentari utilizzati con pazienti CDG
GLOSSARIO Nº8: Allergia 

FRANÇAIS
Mini GLOSSAIRE
Glossaire Nº1: Système immunitaire
GLOSSAIRE Nº5: Types d’Infection
GLOSSAIRE Nº2:Tests immunologiques 
​GLOSSAIRE Nº6: Agents d’infection
GLOSSAIRE Nº3: Altérations immunologiques
GLOSSAIRE Nº7: Maladie auto-immune 
GLOSSAIRE Nº4: Supplément nutritionnel pour CDG 
GLOSSAIRE Nº8: Allergie 

ARABIC
Mini-GLOSSARIES
GLOSSARY Nº 1: Immune System
GLOSSARY Nº5: Types of Infection
GLOSSARY Nº2: Immunological tests
GLOSSARY Nº6: Agents of infection
GLOSSARY Nº3: Immune Alterations 
GLOSSARY Nº7: Autoimmune disease
GLOSSARY Nº4: Nutritional supplementation therapies in CDG
GLOSSARY Nº8: Allergy

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MetabERN (the ERN for Hereditary Metabolic Disorders)

is a partner of this project!
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©2017 CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies - PPAIN)
  • About
  • Research
    • WP1 executive commitee
    • WP2 CDG Diagnosis
    • WP3 CDG Genetics
    • WP4 Biology to guide CDG therapies >
      • GlycoImmunology >
        • ImmunoCDGQ
        • ImmunoQ
      • Cardioendocrine
      • Liver
      • Neurology
      • Hematology
      • Ophtalmology
      • Skeletal Disease
    • WP5 SYSTEMS BIOLOGY AND BIOINFORMATICS >
      • Biomedical
      • Computational
      • Metabolomics
      • Systems Biology
    • WP6 CLINICAL AND THERAPEUTIC CDG RESEARCH >
      • Patients
      • Pharmacological
      • CDG ​Portugal
    • WP7 CDG psychology and educational research >
      • Psychology
      • Educational
      • Language
    • WP8 CDG Lobby and Representation >
      • Patient-Centered Care
      • Patient Representative
    • WP9 Communication and Dissemination >
      • Eva Morava
      • Jaak Jaeken
      • Paula Videira
      • Andrea Berarducci
      • David Cassiman
      • Bobby Ng
      • Sandro Bellinzis
    • WP10 Donations & Funds
    • WP11 Collaborations and Open positions
    • WP12 CDG & Allies Community Advisory Committee
  • Resources
  • Donate
  • CDG Maps
  • Blog