OBSOLETE: Epimetaphyseal skeletal dysplasia

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2Active trials8Treatment centers

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Overview

Epimetaphyseal skeletal dysplasia is an extremely rare bone disorder that affects the growth and development of bones, specifically at the ends of long bones (epiphyses) and the areas just below them (metaphyses). This condition is now classified as 'obsolete' in medical databases, meaning it has likely been reclassified or merged into other more precisely defined skeletal dysplasia categories as our understanding of bone disorders has improved over time. Patients with this type of skeletal dysplasia typically experience abnormal bone growth that can lead to short stature, joint problems, and skeletal deformities. The bones may appear irregular on X-rays, particularly around the joints of the arms and legs. Because this is an obsolete classification, patients who were previously diagnosed with this condition may now fall under a more specific diagnosis based on modern genetic testing and updated classification systems. Treatment has generally been supportive, focusing on managing symptoms such as pain, mobility issues, and skeletal complications. Orthopedic interventions, physical therapy, and regular monitoring of bone growth are common approaches. If you or a family member received this diagnosis, it is strongly recommended to seek re-evaluation by a clinical geneticist who can apply current diagnostic criteria and potentially identify a more precise underlying condition.

Key symptoms:

Short statureJoint stiffness or limited range of motionAbnormal bone shape visible on X-raysBowed legs or knock kneesPain in the joints or limbsWaddling gait or difficulty walkingIrregular growth of long bonesSkeletal deformitiesEarly-onset arthritis or joint wear

Age of Onset

Childhood

Begins in childhood, roughly ages 1 to 12

Orphanet ↗NORD ↗

FDA & Trial Timeline

2 events
Jun 2023Extreme Morphology and Metabolic Health

University of Bath

TrialACTIVE NOT RECRUITING
Jan 2015Decoding the Genetic Landscape of Skeletal Diseases

Karolinska Institutet — NA

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Epimetaphyseal skeletal dysplasia.

2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

2 recruitingView all trials with filters →
N/A1 trial
Decoding the Genetic Landscape of Skeletal Diseases
N/A
Actively Recruiting
PI: Giedre Grigelioniene, MD, (Dept Molecular Medicine and Surgery, KI) · Sites: Stockholm
Other1 trial
Extreme Morphology and Metabolic Health
Active
PI: James A Betts, PhD (University of Bath) · Sites: Bath · Age: 1699 yrs

No specialists are currently listed for OBSOLETE: Epimetaphyseal skeletal dysplasia.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to OBSOLETE: Epimetaphyseal skeletal dysplasia.

Search all travel grants →NORD Financial Assistance ↗

Community

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Caregiver Resources

NORD Caregiver Resources

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Mental Health Support

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Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.Is my diagnosis still classified as epimetaphyseal skeletal dysplasia, or has it been reclassified under a more current diagnosis?,Would genetic testing help identify the specific cause of my condition?,What monitoring or imaging should be done regularly to track bone and joint health?,Are there any physical activities I should avoid to protect my joints?,What treatment options are available to manage pain and improve mobility?,Should I be referred to a specialized skeletal dysplasia center for re-evaluation?,Are there any clinical trials or new therapies being studied for my condition?

Common questions about OBSOLETE: Epimetaphyseal skeletal dysplasia

What is OBSOLETE: Epimetaphyseal skeletal dysplasia?

Epimetaphyseal skeletal dysplasia is an extremely rare bone disorder that affects the growth and development of bones, specifically at the ends of long bones (epiphyses) and the areas just below them (metaphyses). This condition is now classified as 'obsolete' in medical databases, meaning it has likely been reclassified or merged into other more precisely defined skeletal dysplasia categories as our understanding of bone disorders has improved over time. Patients with this type of skeletal dysplasia typically experience abnormal bone growth that can lead to short stature, joint problems, and

At what age does OBSOLETE: Epimetaphyseal skeletal dysplasia typically begin?

Typical onset of OBSOLETE: Epimetaphyseal skeletal dysplasia is childhood. Age of onset can vary across affected individuals.

Are there clinical trials for OBSOLETE: Epimetaphyseal skeletal dysplasia?

Yes — 2 recruiting clinical trials are currently listed for OBSOLETE: Epimetaphyseal skeletal dysplasia on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.