OBSOLETE: Leptomyelolipoma

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ORPHA:268838
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1Active trials8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Leptomyelolipoma is an extremely rare type of tumor that has been classified as an obsolete term in medical databases, meaning the condition has been reclassified or merged with other related diagnoses over time. This tumor is a variant of myelolipoma, which is a benign (non-cancerous) growth made up of a mixture of fat tissue and blood-forming (hematopoietic) cells, similar to what is normally found in bone marrow. Leptomyelolipoma specifically refers to a form where the fat component is more prominent and the blood-forming tissue is relatively sparse or thin. These tumors are most commonly found in the adrenal glands, which sit on top of the kidneys, but they can occasionally occur in other locations in the body. Most people with this type of tumor have no symptoms at all, and the growth is often discovered by accident during imaging studies done for other reasons. When symptoms do occur, they may include mild abdominal or flank pain, a feeling of fullness, or discomfort if the tumor grows large enough to press on nearby structures. Because this is a benign condition, the outlook is generally very good. Treatment is usually not needed unless the tumor causes symptoms or grows significantly, in which case surgical removal may be considered. Since this term is now considered obsolete, patients may find their condition described under the broader category of myelolipoma or adrenal myelolipoma in current medical literature.

Key symptoms:

No symptoms in most cases (found by accident)Mild abdominal pain or discomfortFlank pain on one sideFeeling of fullness in the abdomenPressure on nearby organs if the tumor is large

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Jan 2019Impact of Adrenal IncidenTalomas and Possible Autonomous Cortisol Secretion on Cardiovascular and Metabolic Alterations

University of Roma La Sapienza

TrialRECRUITING

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

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Leptomyelolipoma.

1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

1 recruitingView all trials with filters →
Other1 trial
Impact of Adrenal IncidenTalomas and Possible Autonomous Cortisol Secretion on Cardiovascular and Metabolic Alterations
Actively Recruiting
PI: Andrea M Isidori, MD, PHD (Sapienza) · Sites: Rome, Italy · Age: 1880 yrs

No specialists are currently listed for OBSOLETE: Leptomyelolipoma.

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: Leptomyelolipoma.

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Community

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Caregiver Resources

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Questions for your doctor

Bring these to your next appointment

  • Q1.Is my tumor causing any symptoms, or was it found by accident?,How large is the tumor, and does it need to be removed?,How often should I have follow-up imaging to monitor the tumor?,Is there any chance this could be cancerous or become cancerous?,Are my adrenal gland hormones functioning normally?,If surgery is recommended, what type of surgery and what is the recovery like?,Why is this term considered obsolete, and what is the current name for my condition?

Common questions about OBSOLETE: Leptomyelolipoma

What is OBSOLETE: Leptomyelolipoma?

Leptomyelolipoma is an extremely rare type of tumor that has been classified as an obsolete term in medical databases, meaning the condition has been reclassified or merged with other related diagnoses over time. This tumor is a variant of myelolipoma, which is a benign (non-cancerous) growth made up of a mixture of fat tissue and blood-forming (hematopoietic) cells, similar to what is normally found in bone marrow. Leptomyelolipoma specifically refers to a form where the fat component is more prominent and the blood-forming tissue is relatively sparse or thin. These tumors are most commonly f

How is OBSOLETE: Leptomyelolipoma inherited?

OBSOLETE: Leptomyelolipoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does OBSOLETE: Leptomyelolipoma typically begin?

Typical onset of OBSOLETE: Leptomyelolipoma is adult. Age of onset can vary across affected individuals.

Are there clinical trials for OBSOLETE: Leptomyelolipoma?

Yes — 1 recruiting clinical trial is currently listed for OBSOLETE: Leptomyelolipoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.