Crandi

Fop Registry

Leo Migdal
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fop registry

The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the most important research projects into Fibrodysplasia Ossificans Progressiva, and is open to all individuals with FOP. It is available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish. Every person living with FOP has unique and important information to contribute, and FOP Australia encourage everyone with FOP to participate. What has been learnt from the registry so far? Check out the registry annual reports on the IFOPA website to see some of the information that is already emerging to change the world’s understanding of this disease.

There will be ongoing reports and publications of the data gained from the FOP Registry. How people with FOP can contribute to the FOP registry: People with FOP may complete the surveys directly, or they can be completed by a parent, relative or caregiver on your behalf (whatever is most convenient for you!). New Format! This year’s FOP Registry Annual Report is interactive to bring you even more dynamic data about FOP. The FOP Registry is the largest and most detailed database of medical information about FOP and those who are living with the condition.

The best part about the FOP Registry is that it is growing every day. That’s because people from around the world living with FOP, and their doctors, are contributing to it. And that means that the understanding of this very rare condition is growing all the time. The FOP Registry was started in 2015 and is open to anyone living with FOP. © 2024 FOP Registry. All Rights Reserved.

Improved user interface Ability to request delete account Read Only mode for surveys Minor bug fixes and improvements The following data, which may be collected and linked to your identity, may be used for the following purposes: The following data may be collected and linked to your identity:

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The FOP Registry Is A Global, Voluntary Database That Collects

The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. It is one of the most important research projects into Fibrodysplasia Ossificans Progressiva, and is open to all individuals with FOP. It is available in seven languages: English, French, German, Italian, Portuguese, Russian and Spanish. Ev...

There Will Be Ongoing Reports And Publications Of The Data

There will be ongoing reports and publications of the data gained from the FOP Registry. How people with FOP can contribute to the FOP registry: People with FOP may complete the surveys directly, or they can be completed by a parent, relative or caregiver on your behalf (whatever is most convenient for you!). New Format! This year’s FOP Registry Annual Report is interactive to bring you even more ...

The Best Part About The FOP Registry Is That It

The best part about the FOP Registry is that it is growing every day. That’s because people from around the world living with FOP, and their doctors, are contributing to it. And that means that the understanding of this very rare condition is growing all the time. The FOP Registry was started in 2015 and is open to anyone living with FOP. © 2024 FOP Registry. All Rights Reserved.

Improved User Interface Ability To Request Delete Account Read Only

Improved user interface Ability to request delete account Read Only mode for surveys Minor bug fixes and improvements The following data, which may be collected and linked to your identity, may be used for the following purposes: The following data may be collected and linked to your identity: