National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Birt-Hogg-Dube syndrome

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How should patients with Birt Hogg Dube syndrome be monitored (i.e. for kidney tumors)?

The following information may help to address your question:


Where can I learn about the management of Birt Hogg Dube syndrome?

GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the diagnosis and management of patients with specific inherited conditions. Click on the link to view the article on Birt Hogg Dube syndrome.
Last updated: 12/30/2016

Where can I obtain information regarding the protocol for monitoring patients with Birt Hogg Dube syndrome?

While there is no consensus on clinical surveillance for patients with Birt Hogg Dube syndrome, GeneReviews provides provisional recommendations which may be utilized until a consensus conference is conducted.[1] To access this information, click here and scroll down to the 'Surveillance' section.
Last updated: 12/30/2016

We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.

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GARD Information Specialist

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  1. Toro JR. Birt-Hogg-Dubé Syndrome. GeneReviews. 08/07/2014; http://www.ncbi.nlm.nih.gov/books/NBK1522/.