NIH Melorheostosis Study

Copyright 20012017 Melorheostosis Association. All rights reserved.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dear Friends,

 

The National Institutes of Health (NIH), the nation's research center located near Washington DC, has approved a protocol for the long term study of Melorheostosis. Patients are being seen at the NIH Clinical Center - the largest hospital in the United States devoted entirely to clinical research. The Melorheostosis Association greatly appreciates NIH's commitment of its vast resources to work toward finding answers for melorheostosis patients.

NIH Clinical Center (click link)

NIH Clinical Center Lobby

 

Key facts about the study:

 

 The study is open to any adult (18 and older) melorheostosis patient from anywhere in the world

 There is no cost to patients for any services at NIH (patients pay their own transportation to and from NIH)

 You and your current doctor can receive full results for all tests performed

 Enrollment is now open

 

For an overview of the study and Frequently Asked Questions, please click: Melorheostosis at NIH

 

For additional information about the study and how to enroll, please contact Eileen Lange, RN, NIH Research Nurse for the Melorheostosis Protocol: langeeil@mail.nih.gov or (301) 435-8434.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Text Box: The National Institutes of Health (NIH)

has approved

 A LONG TERM STUDY OF 
MELORHEOSTOSIS
 
and is 
Currently Seeing Patients