*note comments: Study to Evaluate Families with History of Carcinoid Cancer

Note:  this study is an NIH study and excludes those with a known genetic syndrome

Study to Evaluate Families with History of Carcinoid Cancer
By The Carcinoid Cancer Foundation (CCF)

The Natural History of Familial Carcinoid Tumor is recruiting participants who are interested in being part of a study that will “evaluate families with a history of carcinoid cancer to determine ways to improve early detection and to find the gene that may cause the tumors.”

If you are a member of a family in which two or more immediate blood relatives have had gastrointestinal carcinoid tumors, you may be eligible for this study. Unaffected spouses of family members diagnosed with carcinoid cancer are also requested to participate.


According to Dr. Richard R.P. Warner, Medical Director of the Carcinoid Cancer Foundation and Professor of Medicine at Mt. Sinai School of Medicine in New York City, “There are several types of carcinoid and related neuroendocrine tumors which are genetically determined and are inherited conditions. They are quite rare, as a group comprising only 4% of all carcinoids. One type in particular, known as familial carcinoid, is very rare but must be considered when two family members have had carcinoid or other NETs. There is no preventive treatment, but early diagnosis could lead to curative treatments. Only 1-2% of carcinoids are familial.”

In the description of the study, it is noted that “While kindreds with familial carcinoid tumors that are not ascribable to known genetic syndromes are exceedingly rare, they provide a unique opportunity to facilitate the identification of the responsible gene mutation. In addition, the mutated gene in the rare familial form may also underlie the origin of the more common sporadic occurrence of carcinoid tumors.”

The study is being conducted at the U.S. National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. The ClinicalTrials.gov identifier for the study is NCT00646022. To read more about the Natural History of Familial Carcinoid Tumor study, click here: http://clinicaltrials.gov/ct2/show/NCT00646022?term=NCT00646022&rank=1.