An alveolar soft part sarcoma occurring in adults. The most common site of involvement is the extremity, particularly the deep soft tissues of the thigh.
Comprehensive, easy-to-understand information about this condition
How we create this content →Inheritance patterns describe how genetic conditions are passed from parents to children.
Inheritance patterns describe how genetic conditions are passed from parents to children.
The limited documentation surrounding alveolar soft part sarcoma is primarily due to its rarity, affecting fewer than 1 in a million individuals. This extreme rarity restricts the scope of systematic clinical studies and comprehensive phenotype documentation. Additionally, the genetic basis was only recently identified, leading to ongoing efforts in clinical characterization. These challenges can understandably lead to frustration for patients and families seeking information.
To navigate your care effectively, consider consulting with an oncologist who specializes in soft tissue sarcomas, as they will have the expertise to guide you through treatment options. Additionally, genetic counseling may be beneficial given the involvement of the ASPSCR1 gene; you can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Engaging in clinical trials could also be a viable option, and you can explore opportunities through the ClinicalTrials.gov website. Unfortunately, there are no identified patient organizations specific to ASPS at this time, but connecting with broader sarcoma support groups may provide additional resources.
Currently, there are 16 active clinical trials investigating various aspects of alveolar soft part sarcoma. These trials may explore new treatment options or approaches to manage the disease. For more information on specific trials and participation eligibility, you can visit ClinicalTrials.gov and search for 'alveolar soft part sarcoma'. This research offers hope for better management strategies and potential advancements in treatment.
Actionable guidance for navigating care for alveolar soft part sarcoma
To navigate your care effectively, consider consulting with an oncologist who specializes in soft tissue sarcomas, as they will have the expertise to guide you through treatment options. Additionally, genetic counseling may be beneficial given the involvement of the ASPSCR1 gene; you can find a genetic counselor through the National Society of Genetic Counselors at findageneticcounselor.com. Engaging in clinical trials could also be a viable option, and you can explore opportunities through the ClinicalTrials.gov website. Unfortunately, there are no identified patient organizations specific to ASPS at this time, but connecting with broader sarcoma support groups may provide additional resources.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Inheritance patterns describe how genetic conditions are passed from parents to children.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
European rare disease database
Genetic and Rare Diseases Info Center
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 — 16 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.