Castleman’s Disease: Tackling Underdiagnosis and Clinical Confusion for Better Patient Outcomes
Madrid, Spain – July 22, 2023 – Dr. Andrés González, a specialist in internal medicine at the Ramón y Cajal Hospital in Madrid, has highlighted the critical challenges of underdiagnosis and clinical confusion in improving the prognosis for patients with Castleman’s disease.This rare lymphoproliferative disorder, affecting both adults and children, can be more deadly than some malignant tumors, with its most complex form, Multicentric Castleman’s Disease, potentially leading to a mortality rate of up to 35 percent within five years of diagnosis if left untreated.
Dr. González explained that the overlapping symptoms of Castleman’s disease with other conditions, such as tumors, lupus, and infections, often lead to diagnostic delays, considerably impacting patient outcomes. An analysis by the medical area of ReclapiRe Diseases revealed that some spanish hospitals have not detected any cases in five years, despite an estimated incidence that suggests or else.
To address these critical issues, there is a pressing need for updated training for healthcare professionals, enhanced coordination among specialized centers, increased investment in research, and the establishment of reference centers with thorough patient registries. “A patient registry is a fundamental tool for identifying patterns, refining diagnostic protocols, and guiding new research avenues. It offers tangible hope for the development of new therapies and improved clinical management of the disease,” Dr.González emphasized.
In line with these efforts, an initiative is underway to establish a Spanish registry for patients with idiopathic multicentric castleman’s disease, known as the ARCANE study. This registry aims to raise awareness among both experts and the general public.
In commemoration of World Castleman’s Disease Day, observed on Wednesday, Madrid will host the first national meeting for patients, their families, and healthcare professionals. Organized by Recusi Rare Diseases in close collaboration with the Spanish Association of Castleman’s Disease, the event will take place at the Federico García Lorca socio-cultural centre in Humanes at 6:00 PM. Dr. Andrés González is scheduled to present on the latest advancements in the clinical understanding of the disease and its current challenges.
“This is a highly important milestone, as it provides a platform for patients, experts, and healthcare professionals to share experiences and knowledge for the first time. Celebrating this event on World Day amplifies its impact and social visibility,” stated Dr. González regarding the importance of the gathering.
Julia Asama, president of the Spanish Association of Castleman’s Disease, underscored the “real and devastating,” yet often “invisible,” impact of the disease. She called for greater support, including access to treatments, psychological assistance, and specialized centers.
