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Rockefeller University Institutional Review Board IRB NUMBER: AAU-0112 IRB APPROVAL DATE: 4/3/2012 IRB EXPIRATION DATE: 4/2/2013 INTERNATIONAL MARCONI ANEMIA REGISTRY (FAR) (This information is confidential
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How to fill out international fanconi anemia registry
How to fill out the international Fanconi Anemia Registry:
01
Visit the official website of the international Fanconi Anemia Registry.
02
Click on the registration tab or link to begin the registration process.
03
Provide personal information such as your full name, date of birth, gender, and contact details.
04
Fill in any relevant medical information, including your Fanconi Anemia diagnosis, if applicable.
05
Answer any additional questions or forms regarding your medical history, treatment, and any other relevant information.
06
Upload any necessary documents or reports related to your Fanconi Anemia diagnosis or ongoing treatment.
07
Review the provided information to ensure accuracy and completeness.
08
Submit the completed registration form to the international Fanconi Anemia Registry.
Who needs the international Fanconi Anemia Registry:
01
Individuals diagnosed with Fanconi Anemia: The registry serves as a centralized database to collect and track data from individuals with Fanconi Anemia. This information can be used for research, developing treatment strategies, and improving patient care.
02
Medical professionals and researchers: The registry offers valuable data and insights into the prevalence, characteristics, and outcomes of Fanconi Anemia. It can aid in research studies, clinical trials, and guiding medical practices related to this rare genetic disorder.
03
Advocacy groups and patient support organizations: The registry can help these organizations better understand the needs and challenges faced by individuals with Fanconi Anemia. It can also provide a platform for sharing resources, connecting patients, and raising awareness about the condition.
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What is international fanconi anemia registry?
The international Fanconi Anemia Registry is a database that collects information about individuals diagnosed with Fanconi Anemia syndrome from around the world.
Who is required to file international fanconi anemia registry?
Healthcare professionals, researchers, and institutions involved in the diagnosis and treatment of Fanconi Anemia patients are required to file the international Fanconi Anemia Registry.
How to fill out international fanconi anemia registry?
To fill out the international Fanconi Anemia Registry, healthcare professionals need to enter relevant patient information such as demographics, medical history, genetic testing results, and treatment outcomes into the designated online platform or database.
What is the purpose of international fanconi anemia registry?
The purpose of the international Fanconi Anemia Registry is to collect and analyze comprehensive data on Fanconi Anemia patients worldwide. This registry aims to improve understanding of the disease, identify trends in diagnosis and treatment, facilitate research, and enhance patient care.
What information must be reported on international fanconi anemia registry?
The international Fanconi Anemia Registry requires reporting of various information including patient demographics, clinical features, genetic testing results, treatment details, and long-term follow-up data. The specific data elements may vary based on the registry's guidelines.
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