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The aim of this observational study is to evaluate the quality of life in patients with congenital afibrinogenemia using the Haemo-QoL SF for kids and the Haem-A-QoL for adult patients.
In this observational study, children and adults suffering from congenital afibrinogenemia confirmed by biology will be enrolled. All patients will receive a questionnaire on quality of life in their own language during a routine visit and filled out by the patient at home. A general questionnaire will be filled out by the patient's physician.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Afibrinogenemia |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaire quality of life | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| The influence of the afibrinogenemia on the patients' quality of life assessed by the Haemo-QoL SF questionnaire (for children) and the Haem-A-QoL questionnaire (for adult) | The quality of life questionnaire includes item assessing:
| At inclusion |
| Measure | Description | Time Frame |
|---|---|---|
| Impact of the afibrinogenemic patient's clinical phenotype on the patients' quality of life | The clinical phenotype will be assessed by a general questionnaire including data on:
| At Inclusion |
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Inclusion Criteria:
Exclusion Criteria:
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Patients suffering from congenital afibrinogenemia
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| Name | Affiliation | Role |
|---|---|---|
| Alessandro Casini, MD | University Hospitals of Geneva | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Children's Hospital of Orange Count | Orange | California | 92868 | United States | ||
| Cohen Children's Medical Center |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 33512441 | Derived | Casini A, von Mackensen S, Santoro C, Djambas Khayat C, Belhani M, Ross C, Dorgalaleh A, Naz A, Unal E, Abdelwahab M, Lozeron ED, Trillot N, Susen S, Peyvandi F, de Moerloose P; QualyAfib Study Group. Clinical phenotype, fibrinogen supplementation, and health-related quality of life in patients with afibrinogenemia. Blood. 2021 Jun 3;137(22):3127-3136. doi: 10.1182/blood.2020009472. |
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| New Hyde Park |
| New York |
| 11040 |
| United States |
| Béni Messous | Algiers | Algeria |
| University of Calgary | Calgary | Canada |
| Cairo University Pediatric Hospital | Cairo | Egypt |
| Chru Lille | Lille | France |
| Universitats Kilinikum Frankfurt | Frankfurt | Germany |
| Dr von Haumer Children's Hospital | Munich | Germany |
| St John Medical College Hospital | Bangalore | India |
| All India Institute of Medical Sciences | New Delhi | India |
| Sapienza Università di Roma | Roma | Italy |
| University School of Medicine | Hamamatsu | Japan |
| Kuwait University | Kuwait City | Kuwait |
| Hotel Dieu-de-France | Beirut | Lebanon |
| St George Hospital | Beirut | Lebanon |
| Hopital d'Enfants de Rabat | Rabat | Morocco |
| Radboud University Medical Centre | Nijmegen | Netherlands |
| National Institute Of Blood Disease and Bone Marrow Transplantation | Karachi | Pakistan |
| Institute of Hematology and Transfusion Medicine | Warsaw | Poland |
| University Clinical Center | Belgrade | Serbia |
| National Centre of Hemostasis and Thrombosis | Martin | Slovakia |
| Hospital Universitari i Politecnic La Fe | Valencia | Spain |
| Inselspital | Bern | Switzerland |
| University Hospitals of Geneva | Geneva | Switzerland |
| Hopital d'Enfants Bechir Hamza | Tunis | Tunisia |
| Uludag University | Bursa | Turkey (Türkiye) |
| Cerrahpasa Faculty of Medicine | Istanbul | Turkey (Türkiye) |
| Erciyes University | Kayseri | Turkey (Türkiye) |
| ID | Term |
|---|---|
| D000347 | Afibrinogenemia |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
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