Placental site and other rare trophoblastic tumours database

• Research type

  Research Database

• IRAS ID

  370981

• Research summary

  Placental Site / Epithelioid Trophoblastic Tumours and Other Rare Trophoblastic Tumours, including Ultra High-Risk GTN: An International Collaborative Project

• REC name

  East Midlands - Derby Research Ethics Committee

• REC reference

  26/EM/0130

• Date of REC Opinion

  2 Jul 2026

• REC opinion

  Favourable Opinion

• Data collection arrangements

  The purpose of this database is to collect information about patients with rare pregnancy related (trophoblastic) tumours, the types of tumours they have, what symptoms and tests / investigations they had, and the treatments they received so we can use this information to work out the best way to treat similar patients with rare cancers in the future. The data collected will be taken only from patient records and
  pseudonymised; this will include details of the patient’s age, pregnancy history, medical condition, tumour pathology, investigations, treatment and follow-up. The data will be in the custody of the Sheffield UK team. Any access to the international database will be only for pseudonymised data and for purposes agreed with the UK study team.

• Research programme

  Placental site and Epithelioid trophoblastic tumours are rare pregnancy-related cancer. As this is such a rare cancer, little was known about its nature and cause with only a few published studies on diagnosis and management. We have previously established an international database in order to determine patient characteristics, clinical and pathological features associated with the development and progress of this rare tumour and have collected and presented data at international meetings and published 2 papers on this. We need to continue to collect data on these rare cancers to know how to improve future treatment for these patients. There are other rare trophoblastic tumours that we need to know more about, such as ultra-high risk gestational trophoblastic neoplasia, a particularly challenging presentation associated with an increased risk of early death due to treatment complications such as infection/bleeding and an increased risk of later relapse or death due to drug-resistant disease. A team of experts will look at the information to better understand how rare trophoblastic tumours have been treated around the world. The goal of this database is to improve patients’ care by better understanding the characteristics of these tumours and how best to treat them in the future.

• Research database title

  Placental Site / Epithelioid Trophoblastic Tumours and Other Rare Trophoblastic Tumours, including Ultra High-Risk GTN: An International Collaborative Project