A Descriptive Study Of Nasopharyngeal Carcinoma

Program: Clinical Studies
Coordinators: Melissa Adde
Other INCTR Participants:
Collaborators: Dr Sameer Bakhski, Dr Sidnei Epelman, Dr Ata Maaz, Dr Enis Ozyar, Dr Ali Varan
Branch(es): Brussels
Location: Multiple Continent
Country(s): India, Brazil, Turkey, Pakistan
Institutions: All India Institute of Medical Sciences, New Delhi, India; Santa Marcelina Hospital, Sao Paulo, Brazil; Shaukat Khanum Memorial Hospital, Lahore, Pakistan; Acibadem University, Instanbul, Turkey; Hacettepe University, Ankara, Turkey
Background Information: Nasopharyngeal carcinoma (NPC) is rare in high income countries, but more common in low and middle income countries (LMIC). In LMIC, patients are generally diagnosed late which results in unnecessary suffering and poor survival for these patients. Genetic aspects, such as familial risk and the association of consanguinity (e.g., having parents who are blood-related) with early onset NPC have important implications for prevention and early detection of pediatric NPC. For these reasons, a descriptive study to identify the major determinants of delays in the diagnosis and treatment of NPC and to focus on the genetic epidemiology of NPC was designed with the input of investigators from many different LMIC.
Objectives: Part 1 - Determinants of Delays in Diagnosis and Treatment in NPC and Part 2 - To Assess Consanguinity and Familial History in NPC
Methods: Basic demographic and socioeconomic data is obtained for all patients. Each component of the study has a questionnaire for interviewing adults patients with NPC or parents of children with NPC. Clinical data relating to the date of diagnosis, treatment, diagnosis, stage and treatment that is obtained from the patient's medical record is completed for all patients.
Progress: To date, 51 questionnaires and clinical data forms have been submitted. A total of 34 adult patients and 17 parents of children with NPC have been interviewed. The majority of submissions have come from India (26) followed by Turkey (22). Other collaborators representing other institutions have not yet to date submitted questionnaires.
Future Plans: All investigators who had indicated a willingness to participate in this study will be contacted in hopes to boost the number of questionnaires representing other countries such as Malaysia, the Philippines and Vietnam will be contacted in the near future to ensure adequate representation of countries with endemic NPC as well as other LMIC.
Duration: indefinite
Year: 2016
Last Update: April 2013

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