Placental site and other rare trophoblastic tumour database
Research type
Research Database
IRAS ID
193524
Contact name
Barry Hancock
Contact email
Research summary
An International Collaborative Project to Extend an Established Database for Placental Site and Other Rare Trophoblastic Tumours
REC name
East Midlands - Derby Research Ethics Committee
REC reference
16/EM/0077
Date of REC Opinion
28 Apr 2016
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The purpose of this database is to collect information about patients with rare trophoblastic tumours, the types of tumours they have, and the treatments they receive. The data collected will be taken only from patient records and anonymised; this will include details of the patient’s age, pregnancy history, medical condition, tumour pathology, investigations, treatment and follow-up. The anonymised data will be in the custody of the Sheffield UK Team. Any access to the international database will be only for anonymised data and for purposes agreed with the UK study management team and International Society for the Study of Trophoblastic Disease. Local clinicians will be able to access their own local data.
Research programme
Placental site trophoblastic tumour (PSTT) is a rare form of gestational trophoblastic disease. Little was known about its nature and cause and few large studies on diagnosis and management have been published. We have established an international database in order to determine the patient characteristics, clinical and pathological features associated with the development and progress of this rare tumour and have, over 10 years, collected and presented data on 326 patients. Since establishing the original PSTT database it has become evident that we need similar data on other rare and difficult to treat trophoblastic tumours. We therefore intend to continue to collect prospective data on PSTT to validate the preliminary findings and use the original database (with minor modifications) to capture data on other rare trophoblastic tumours. A team of experts will look at the information to better understand how rare trophoblastic tumours are treated around the world. The goal of this database is to improve patients’ care by better understanding the characteristics of this tumour and treatment choices.
Research database title
An International Collaborative Project to Extend an Established Database for Placental Site and Other Rare Trophoblastic Tumours
Establishment organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Establishment organisation address
Clinical Research & Innovation Office
Royal Hallamshire Hospital, Glossop Road
S10 2JF