Your product. Their vote.
Have a product eligible for the 2026 Townie Choice Awards? Make sure it's entered before the extended July 6 deadline.

Submit Your Product →

NIDCR Readies First Human Trial for Rare Disorder Affecting Jaw and Skull

Start Discussion
Posted: July 2, 2026

NIDCR Readies First Human Trial for Rare Disorder Affecting Jaw and Skull

Edited by Dentaltown staff

The National Institute of Dental and Craniofacial Research is preparing to launch a first-in-human clinical trial of an experimental drug for Jansen’s disease, an ultra-rare skeletal disorder that can disrupt development of the skull, jaw, and facial bones. The institute marked a site-initiation visit for the trial on May 21, an early step toward enrolling patients.

Jansen’s disease, also called Jansen’s metaphyseal chondrodysplasia, is known in only about 30 people worldwide. It interferes with normal bone development beginning in infancy and can cause severe skeletal abnormalities, chronic pain, and limited mobility. Many patients also develop complications in the skull, jaw, and facial bones that lead to dentofacial differences along with hearing and vision loss. No effective treatment exists, and patients often need repeated surgeries over a lifetime.

The experimental compound is designed to correct the molecular defect that drives the disease by switching off an overactive protein, rather than only easing symptoms. Scientists at Massachusetts General Hospital developed it, and the National Center for Advancing Translational Sciences helped move it through preclinical testing.

NIDCR Clinical Director Janice Lee said rare pediatric bone diseases require “highly specialized expertise, long-term commitment, and close collaboration across many groups.” She noted that the institute’s experience with rare skeletal disorders involving the skull and face made it well suited to lead the study.

The trial will be led by Alison Boyce, a pediatric endocrinologist who heads NIDCR’s Metabolic Bone Disorders Unit and whose earlier work on another rare bone disorder informed the new effort. It is registered with ClinicalTrials.gov and reflects a broader NIH push to study rare and neglected diseases that draw little commercial investment.

Sources:
National Institute of Dental and Craniofacial Research, “NIDCR Prepares First-in-Human Trial for Jansen’s Disease Therapy,” June 25, 2026: nidcr.nih.gov/jansens-disease-trial
ClinicalTrials.gov, study record NCT07541209: clinicaltrials.gov/study/NCT07541209


NIDCR Readies First Human Trial for Rare Disorder Affecting Jaw and Skull

Views: 9
Start Discussion
Dentaltown Magazine
June 2026
Dentaltown Magazine June 2026 Read Current Issue Read Archived Issues
Sponsors
Townie Perks
Townie® Poll
What part of a dental office do you feel makes the strongest first impression on patients?
  
Site Menu
Message Boards Magazine Continuing Education Pods & Blogs Classifieds Dental News Events Townie® Poll Ebooks Townie Choice Awards
Company Info
Contact Us Advertise With Us Howard Farran DDS, MBA Policies and Agreements
Site Help
The Dentaltown Team, Farran Media Support
Phone: +1-480-445-9710
Email: support@dentaltown.com
©2026 Dentaltown, a division of Farran Media • All Rights Reserved
9633 S. 48th Street Suite 200 • Phoenix, AZ 85044 • Phone:+1-480-598-0001 • Fax:+1-480-598-3450