Registry

Registry

Through the fundraising efforts of this amazing group of women, we have recently begun a Cancer Registry for high-grade (including small cell and large cell) neuroendocrine cervical cancer. This is Institutional Review Board (IRB) approved research through M. D. 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 family members of women who lost their battle.

Contact

If you would like to obtain more information about the Registry or are interested in
participating, please contact us here.

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    Gynecologic Oncology &
    Reproductive Medicine,
    NECTUR Study

    Unit 1362, P.O. Box 301439,
    Houston, TX 77230-1439

FAQ

  • 1. 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.

  • 2. 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.
    • Next of kin of patients who are deceased but had a history of NEC of the cervix are eligible to participate on their loved one’s behalf.

  • 3. 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.