What is Primary cutis verticis gyrata?
Primary cutis verticis gyrata (CVG) is a rare skin condition where the scalp develops deep folds and furrows that look similar to the surface of the brain. The word 'gyrata' refers to these brain-like ridges. In the primary form, the condition occurs on its own without being caused by another underlying disease — this is what makes it 'primary.' There is also a secondary form caused by other conditions, but this entry focuses on the primary type. The folds usually appear on the top and back of the scalp and can range from a few ridges to many deep grooves. The skin within the folds is normal but cannot be flattened out. The condition is much more common in males than females. In some cases, it is linked to neurological or eye problems, while in others the person has no other health issues at all. There is no cure for primary CVG. Treatment is mainly focused on keeping the scalp clean to prevent infections in the skin folds. In some cases, surgery can be done to remove the extra skin and improve appearance. Regular check-ups with a dermatologist are important to monitor the scalp and catch any complications early.
Key symptoms:
Deep folds and ridges on the scalp that look like brain foldsScalp skin that cannot be flattened or smoothed outThickened scalp skinSkin folds that may trap sweat, oil, and bacteriaScalp infections or odor due to buildup in the foldsHair loss in some areas of the scalpPossible intellectual disability (in some cases)Possible eye problems such as cataracts or abnormal eye movements (in some cases)Possible neurological symptoms such as seizures (in some cases)Gradual worsening of the scalp folds over time in some individuals
- Inheritance
- Variable
- Can be inherited in different ways depending on the underlying gene
- Age of Onset
- Variable
- Can begin at different ages, from infancy through adulthood
Treatments
Source: openFDA + DailyMed · NDA / BLA labels with structured indications · refreshed weekly
No FDA-approved treatments are currently listed for Primary cutis verticis gyrata.
View clinical trials →Clinical Trials
View all trials with filters →Source: ClinicalTrials.gov · synced daily · phases, status, and PI names normalized at ingest
No actively recruiting trials found for Primary cutis verticis gyrata at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →Source: NPI Registry + PubMed · trial PI roles cross-referenced with ClinicalTrials.gov · ranked by match score (publications + PI activity + community signal)
No specialists are currently listed for Primary cutis verticis gyrata.
Treatment Centers
8 centersSource: NORD Rare Disease Centers + NIH Undiagnosed Diseases Network (UDN) · centers verified active within last 12 months
Children's Hospital Colorado Rare Disease Program ↗
Children's Hospital Colorado
📍 Aurora, CO
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDBoston Children's Hospital Rare Disease Program ↗
Boston Children's Hospital
📍 Boston, MA
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
🏨 Children'sAnn & Robert H. Lurie Children's Hospital Genetics ↗
Lurie Children's Hospital
📍 Chicago, IL
👤 Boston Children's Hospital Rare Disease Program
🏥 NORDCincinnati Children's Hospital Medical Center ↗
Cincinnati Children's
📍 Cincinnati, OH
👤 Boston Children's Hospital Rare Disease Program
🏨 Children'sNationwide Children's Hospital Rare Disease Center ↗
Nationwide Children's Hospital
📍 Columbus, OH
👤 Boston Children's Hospital Rare Disease Program
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
Travel Grants
No travel grants are currently matched to Primary cutis verticis gyrata.
Community
No community posts yet. Be the first to share your experience with Primary cutis verticis gyrata.
Start the conversation →Latest news about Primary cutis verticis gyrata
Source: PubMed + NIH RePORTER + openFDA + clinical-journal RSS · last 30 days · disease-tagged at ingest by AI extraction with human QC
No recent news articles for Primary cutis verticis gyrata.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 CVG the primary form, or could there be an underlying condition causing it?,Should I have genetic testing, and what might it tell me about the cause?,What is the best daily routine for cleaning my scalp and preventing infections?,Am I a candidate for surgery, and what are the risks and benefits?,Do I need to see a neurologist or eye doctor as part of my care?,How is this condition likely to change over time?,Are there any support groups or resources for people with this condition?
Common questions about Primary cutis verticis gyrata
What is Primary cutis verticis gyrata?
Primary cutis verticis gyrata (CVG) is a rare skin condition where the scalp develops deep folds and furrows that look similar to the surface of the brain. The word 'gyrata' refers to these brain-like ridges. In the primary form, the condition occurs on its own without being caused by another underlying disease — this is what makes it 'primary.' There is also a secondary form caused by other conditions, but this entry focuses on the primary type. The folds usually appear on the top and back of the scalp and can range from a few ridges to many deep grooves. The skin within the folds is normal
Frequently asked questions about Primary cutis verticis gyrata
Auto-generated from canonical disease facts (Orphanet, OMIM, ClinicalTrials.gov, openFDA, NPPES). Not a substitute for clinical guidance.
What is Primary cutis verticis gyrata?
Primary cutis verticis gyrata is a rare disease catalogued in international rare-disease ontologies (Orphanet ORPHA:671). It is typically inherited as variable. Age of onset is generally variable. For verified primary sources, see the UniteRare Primary cutis verticis gyrata page.
How is Primary cutis verticis gyrata inherited?
Primary cutis verticis gyrata follows variable inheritance. Genetic counseling is recommended for affected families to understand recurrence risk in offspring and the likelihood of unaffected siblings being carriers. Variants in the underlying gene(s) may be identified via clinical genetic testing.
Are there FDA-approved treatments for Primary cutis verticis gyrata?
Approved treatments for Primary cutis verticis gyrata are tracked from openFDA and DailyMed primary sources. Many rare diseases have no specific FDA-approved therapy; for those, supportive care and management of complications form the basis of clinical care. Orphan-drug-designation status is noted where applicable.
Are there clinical trials for Primary cutis verticis gyrata?
Active clinical trials for Primary cutis verticis gyrata are tracked daily from ClinicalTrials.gov. Trial availability changes frequently; check the UniteRare trial listings for the current count and recruitment status. Sponsors of rare-disease research often welcome inquiries even when a trial is not actively recruiting at a given moment.
How do I find a specialist for Primary cutis verticis gyrata?
Verified Primary cutis verticis gyrata specialists are identified through ClinicalTrials.gov principal-investigator records, peer-reviewed publication authorship (via PubMed), and the NPPES NPI registry. NORD-designated Centers of Excellence and NIH-affiliated rare-disease clinics are also tracked. UniteRare's specialist directory is updated continuously as new evidence becomes available.
See full Primary cutis verticis gyrata page for complete clinical details, sources, and verified-specialist listings.
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