Paraneoplastic syndrome

This phase 2 trial tests a combination of three drugs—carfilzomib, cyclophosphamide, and dexamethasone—in 20 people newly diagnosed with POEMS syndrome, a rare disorder affecting nerves and blood. The goal is to see if the regimen can reduce abnormal proteins and improve symptoms…

This study tests a new type of PET/CT scan using a tracer called Al18F-NOTA-LM3 to find tumors that cause tumor-induced osteomalacia (TIO), a rare condition where bones soften and weaken. Researchers will compare this new scan to the standard 68Ga-DOTATATE PET/CT in 40 adults wit…

This study tests whether whole-body electrical muscle stimulation (WB-EMS) can help adults with neuromuscular diseases like ALS, SMA, and muscular dystrophy exercise safely. Because these conditions weaken the nerves that control muscles, traditional exercise is often too hard. W…

This study aims to collect information and bone samples from up to 1,000 people with bone or mineral disorders, such as tumor-induced osteomalacia or familial tumoral calcinosis. Participants receive standard medical evaluations and may provide bone tissue from surgery or a biops…

This study looks at a specific gene (IGLV1-44) to understand why it causes two different diseases: AL amyloidosis and POEMS syndrome. Researchers will analyze blood and bone marrow samples from 100 adults with these conditions or multiple myeloma. The goal is to find genetic patt…

This study looks at whether a special blood test (liquid biopsy) can find tumor cells in people with paraneoplastic neurological syndromes (PNS), a condition where the immune system attacks the nerves due to an undetected cancer. Researchers will collect blood from 60 participant…

This study collects blood samples from 1000 people with rare neurological diseases that may be autoimmune. Researchers will use the samples to find new biomarkers and autoantibodies, which could help diagnose and treat these conditions in the future. Participants give extra blood…

This study looks at the gut microbiome (the bacteria living in the digestive system) of people with POEMS syndrome, multiple myeloma, MGUS, AL amyloidosis, and healthy household members. Participants provide stool samples at home using a collection kit. The goal is to understand …

This study creates a registry for adults with plasma cell disorders, such as multiple myeloma and amyloidosis. Researchers will collect health information and optional blood samples to better understand these conditions. The goal is to gather data that could support future resear…