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Make an Impact
50% of people with cancers have a rare cancer. Many such cancers are understudied and their cause remains unknown. Treatment options for patients with rare cancers are often limited. The Memorial Sloan Kettering Make-an-IMPACT initiative provides individuals with rare cancers the opportunity to receive genomic testing at no cost to the patient. The primary purpose of the Make-an-IMPACT initiative is to understand why these rare cancers occur and to accelerate the development of new therapies for these diseases. Currently, the Make-an-IMPACT initiative is recruiting patients with the following rare cancers:
- Ovarian Germ Cell Tumors
- Sacrococcygeal Germ Cell Tumors
- Testicular Germ Cell Tumors that are refractory to chemotherapy
- Mediastinal Germ Cell Tumors
- Secretory Breast Carcinoma
- Cholangiocarcinoma, Patients with Active or Recurrent Metastatic disease, residing in the U.S.
- Pediatric Adenoid Cystic Carcinoma
- Metastatic Cervical Cancer
Germ cell tumors are cancers that develop from germ cells. They most commonly arise in the testis in males and in the ovary in females. More rarely that can arise in the mediastinum or in the sacrococcygeal region. While germ cell tumors can often be treated effectively with chemotherapy, newer treatments are needed for patients whose tumors recur following standard therapy.
Histiocytosis refers to a group of rare cancers that arises from dendritic cells or macrophages. Erdheim–Chester disease, Langerhans cell histiocytosis, and Rosai-Dorfman disease are three types of histiocytosis. These tumors often harbor mutations in BRAF or related family of genes and may respond to drugs that target these proteins. There is currently a clinical trial for histiocytosis patients without BRAF mutations at MSK.
Mammary Secretory Carcinoma is an extremely rare tumor type, accounting for < 0.02% of breast cancer cases. While Mammary Secretory Carcinomas typically arise in children they are also rarely seen in adults. These tumors often harbor ETV6-NTRK3 fusions and patients with this disease may respond to a new class of drugs that target this alteration.
Cholangiocarcinoma is a rare cancer type that arises from the bile ducts. Several clinical trials at MSK are recruiting patients with cholangiocarcinomas. These studies often require tumor genomic testing to determine eligibility.
Adenoid cystic carcinoma is a rare head and neck cancer that most commonly arises in the salivary glands. It also can develop in the sinus, lacrimal gland, ear canal, vocal chords, skull base, and palate. It is unknown whether ACC that occur in children/young adults are biologically distinct from those in adults. New treatments are urgently needed for patients with pediatric ACC whose cancers recur following treatment.
Tumor genomic profiling can identify molecular alterations in patients with cervical cancer that can serve as targets for cancer drugs under active clinical investigation. Promising clinical results have been reported in patients with metastatic cervical cancer whose tumor have a mutation in the ERBB2 (HER2) gene.
Studying extremely rare cancer types presents many challenges. If you have been diagnosed with one of these rare cancers you can help us understand how these cancers develop and identify the best ways to treat them.