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About the Registry

Through the fundraising efforts of this amazing group of women, we have created a cancer registry for high-grade (including small cell & large cell) neuroendocrine cervical cancer, which now includes over 500 patients This is Institutional Review Board (IRB) approved research through MD Anderson Cancer Center.

Since this cancer is so rare, it is difficult to collect enough information at any single institution to provide meaningful results. The purpose of this registry is to obtain information about diagnosis, stage, treatment, and survival of women with this disease. The registry is international and is open to women currently affected with the disease, survivors and legal authorized representatives of women who lost their battle. Contact research staff if you are interested in enrolling.

Registry Details

What is the purpose of the registry?

Our goal is to create a large tumor registry of patients with neuroendocrine carcinoma of the cervix which catalogs information regarding diagnosis, treatment course, surveillance and recurrence patterns, and disease outcomes.

Who can enroll in the registry?

  • Patients with a personal history of cervical cancer with any portion of the tumor a neuroendocrine component (including mixed tumors) of the following histologic subtypes:
    a. Small cell neuroendocrine carcinoma
    b. Large cell neuroendocrine carcinoma
    c. Undifferentiated high-grade neuroendocrine carcinoma
  • Patients may be in any phase of treatment, surveillance or recurrence at the time of initial participation in the study.
  • Patients with all stages of disease are considered eligible.
  • Patients must speak English or Spanish.
  • Patients who are receiving or have received treatment at any facility, including but not limited to M. D. Anderson Cancer Center are eligible.
  • Patient may be residents of any country and may be of any ethnic background.
  • Patients who request to participate in the study, regardless of the method by which they learned of it, are eligible to participate, including, but not limited to patients who seek participation via the website.
  • Legal authorized representative of patients who are deceased but had a history of NEC of the cervix are eligible to participate on their loved one’s behalf.

What will the registry provide?

The registry will help us organize data into meaningful information correlating disease characteristics and treatment patterns with disease outcomes. By opening up the registry beyond our own institution and including patients treated at a wide diversity of facilities, our registry will expand existing knowledge about this rare disease that is more generalizable than currently exists.

Do I need to be a MD Anderson patient to participate?

No, the registry is open to women living in any country and who have been treated at any medical facility worldwide.

Can I enroll a family member that is deceased?

Yes, please contact the registry coordinator for more information.

Where is the registry housed?

University of Texas MD Anderson Cancer Center in Houston, TX

What does NECTUR stand for?

Neuroendocrine Cervical Tumor Registry