One of the biggest challenges associated with rare diseases is finding enough patients to conduct meaningful research.  Gathering scientific data on the cancer itself, along with details such as the way the disease was detected, the stage at which it was diagnosed, the treatment employed and ultimately the outcome, will help doctors understand how neuroendocrine cervical cancer (including Large and Small Cell Cervical Cancers) behave.  More importantly, research is needed to identify a more standard approach for successfully treating women afflicted by this deadly, fast-moving cancer.

The Neuroendocrine Cervical Tumor Registry (NECTuR) was launched at MD Anderson Cancer Center in 2013 to serve as a centralized collection point for data that will further scientific exploration into this disease.  The registry was borne from one woman’s desire to do something to help her sister who had been diagnosed and was being treated at MD Anderson. Jen Dunmoyer, the patient who battled SCCC, likes to say that all she did was get sick; in reality, she inspired her sister, Jessica McGinnis, and lots of women after her, to take action to fund research for Small and Large Cell Cervical Cancer.  Jessica and Jen threw down the gauntlet, and other dedicated S/LCCC fighters accepted the challenge, and a grassroots effort took hold.  Four years and almost $250k later, the NECTuR study was founded at MD Anderson. As of September, 2014, the registry includes medical records for 76 patients, and recruiting efforts to bolster these numbers are underway.

The purpose of the registry is to consolidate medical information from women with cervical tumors that have a neuroendocrine component, whether that is Small Cell, Large Cell or undifferentiated high-grade neuroendocrine carcinoma.  To participate, patients (or their next of kin if the patient is deceased) must only fill out a brief questionnaire and consent to having MD Anderson obtain their medical records from their healthcare providers.  Patients need not have been treated at MD Anderson, and the study is not limited to women who reside in the United States, though fluency in English or Spanish is a requirement.  To learn more about joining the registry, visit necervix.com.

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