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With the emergence of SARS-CoV-2 and the COVID-19 pandemic, there is an urgent need to understand the impact of infection on immunodeficient individuals. Whilst co-morbidities (such as diabetes, cancer, arterial hypertension, heart disease...) have been documented in people infected with SARS-CoV-2, there is currently no information on the consequences and outcomes for individuals with primary immunodeficiencies (PID).
Following the 1st phase of the survey (launched by Isabelle Meyts (ESID), Nizar Mahlaoui (CEREDIH & IPOPI) and Kate Sullivan with Stuart Tangye (IUIS), that gave an idea of the number of affected PID patients and the impact of SARS-CoV-2 and directly focusing on obtaining this top level of information), we are launching the 2nd phase: "COPID19".
COPID19 survey is a secured online GDPR compliant platform based in Paris (Imagine Institute). It has been approved by the Paris-Necker-Enfants malades IRB and Ethics Committee. However, this retrospective survey is designed for global distribution. Data can be entered by a health care professional (mostly clinicians) through a personal login and password.
Each documenting person will have access to his/her own patients' data. COPID19 require a greater level of information than the 1st phase. The eCRF will be open to evolutions depending on progresses in our knowledge of this pandemic.
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| Measure | Description | Time Frame |
|---|---|---|
| Survival of patients with PID affected by COVID-19 | Baseline | |
| Rate of admission to ICU of patients with PID affected by COVID-19 | Baseline | |
| Rate of oxygen therapy of patients with PID affected by COVID-19 | Baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Sequelae of patients with PID affected by COVID-19 | Baseline |
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Inclusion Criteria:
Exclusion Criteria:
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All patients with Primary Immune Deficiency and COVID-19
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Nizar MAHLAOUI, MD, MPH, PhD | Contact | +33144494622 | nizar.mahlaoui@aphp.fr | |
| Hassan FAOUR, BS | Contact | +33 1 42 75 44 73 | supportdatabase@institutimagine.org |
| Name | Affiliation | Role |
|---|---|---|
| Nizar MAHLAOUI, MD, MPH, PhD | Necker Enfants Malades University Hospital | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Imagine Institute | Recruiting | Paris | 75015 | France |
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| ID | Term |
|---|---|
| D000081207 | Primary Immunodeficiency Diseases |
| ID | Term |
|---|---|
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D007153 | Immunologic Deficiency Syndromes |
| D007154 | Immune System Diseases |
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