A T-cell non-Hodgkin lymphoma arising from the skin. Representative examples include mycosis fungoides and primary cutaneous anaplastic large cell lymphoma.
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
The documentation surrounding primary cutaneous T-cell non-Hodgkin lymphoma is limited due to its rarity, which affects fewer than 5,000 individuals in the U.S. This low prevalence results in fewer systematic clinical studies and a lack of comprehensive data on clinical features and genetic underpinnings. As research continues, more insights may emerge, but currently, the understanding of this condition is still evolving.
To navigate your care effectively, seek out a hematologist or oncologist with specific expertise in lymphomas, particularly cutaneous lymphomas. Consider participating in clinical trials, which can provide access to cutting-edge therapies. Resources like the National Organization for Rare Disorders (NORD) at rarediseases.org can offer additional support and information. Although there are currently no patient organizations specifically for PCTCL, staying connected with larger lymphoma support networks may provide valuable community and resources.
There are several orphan drugs approved for PCTCL, including Bexarotene, denileukin diftitox-cxdl, nivolumab, pembrolizumab, and vorinostat. Additionally, there are ongoing clinical trials exploring new treatment options, with 34 active trials currently listed. For more information on these trials, you can visit ClinicalTrials.gov and search for 'primary cutaneous T-cell non-Hodgkin lymphoma'. This research landscape offers hope for improved treatment strategies in the future.
Actionable guidance for navigating care for primary cutaneous T-cell non-Hodgkin lymphoma
To navigate your care effectively, seek out a hematologist or oncologist with specific expertise in lymphomas, particularly cutaneous lymphomas. Consider participating in clinical trials, which can provide access to cutting-edge therapies. Resources like the National Organization for Rare Disorders (NORD) at rarediseases.org can offer additional support and information. Although there are currently no patient organizations specifically for PCTCL, staying connected with larger lymphoma support networks may provide valuable community and resources.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Consider asking your healthcare providers these condition-specific questions
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 27 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.