What are Rare Child and Adolescent Malignancies?
The Rare Disease Act of 2002 defines a rare disease as one that affects populations smaller than 200,000 persons in the United States thus, by definition, all child and adolescent cancers would be considered rare and although the overall incidence of childhood cancer has been slowly increasing there remain only about 15,000 new cases diagnosed each year. Most rare cancers are in a subset of malignancies that include thyroid cancer, melanoma and non-melanoma skin cancers, in addition to multiple types of carcinomas such as adrenocortical carcinoma, nasopharyngeal carcinoma, and most adult-type carcinomas such as breast cancer, and colorectal cancer. Collectively they represent less than 2 – 3 % of all new diagnoses. The very low incidence of patients with any individual diagnosis, and their age distribution, makes these rare cancers extremely challenging to study. All of these cancers are rare enough that most children’s hospitals might see less than a handful in several years.
Our approach to rare cancers
It is imperative that children and adolescents with cancer be referred to medical centers that have a multidisciplinary team of cancer specialists with experience treating not only patients with unusual diseases, but also have the resources to provide care to complex cases. The oncology team at Columbia University and the NewYork Presbyterian Morgan Stanley Children’s Hospital are able to offer patients with rare cancers a unique profile of clinical trials, innovative molecular diagnostics including gene sequencing, as well as the full spectrum of pediatric subspecialists.