NIH Melorheostosis Study
© Copyright 2001—2023 Melorheostosis Association. All rights reserved.
Applications Open for Melorheostosis Patients to be Seen in 2023
Melorheostosis patients around the world are welcome to apply to be seen at The National Institutes of Health (NIH), the nation's research center located near Washington DC, pursuant to its 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.
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 open and ongoing
For an overview of the study and Frequently Asked Questions, please click: Melorheostosis at NIH
Are you interested in participating? If so, review the following documents and steps prior to emailing Nancy Spencer, NIH Research Nurse. Once you have your records ready to mail and the demographic information form completed, email Nancy indicating your interest and demographic information.
Demographic Information - complete this form to include in your email.
Collect Your Records - mailing your records (x-rays, images, etc) via UPS or FedEx is required prior to acceptance in the study.
Review the Study Consent - no need to sign and send a copy, just review so you know what the study entails. You will formally sign upon admission at NIH.
Review the Study Overview - learn more about participation.
Check out our Facebook Group Tips - learn more about the patient experience during the study. Ask questions of your fellow Melo Warriors who have participated!
Nancy Spencer, NIH Research Nurse
Note: The best way to contact Nancy is by email. She can send you helpful information as well as answer any questions you may have.