Details of medical studies

The following studies contain information provided by NHS England (or predecessor organisations). They record identifiable data such as mortality data (cause and date of death information sourced from civil registration data held by the Office for National Statistics) from cancer registrations and have been granted approval from the Health Research Authority to receive information from third-party sources where consent is not possible. Some studies may also include information provided by NHS Scotland and NHS Wales. These studies use this information to analyse risk factors for cancer and mortality and include:

• A cohort and questionnaire study of young women treated for Hodgkin lymphoma in England and Wales before 2010 for the cohort, and 2015 for the questionnaire study, investigating the risk of developing a range of treatment-related effects.
• A case-control study of the causes of leukaemia, relating to patients with leukaemia incidence before 2010 in the southeast of England, plus controls.
• A national UK study looking at the pre-1997 incidence of endometrial cancers occurring after breast cancer. 
• A study of risk factors for contralateral primary breast cancer in women in the UK (focused on data gathered before 2008). 
• A national England and Wales case-control study of breast cancer in men (focused on patients with breast cancer incidence in 2005 or later and including controls).
• Exploring cancer incidence in UK patient cohorts with:
  • a) insulin-treated diabetes diagnosed before 1994
  • b) paediatric endocrine disease diagnosed before 2000 and associated treatments
  • c) cytogenetic disorders diagnosed before 2003
• A study of cancer in twins born before 2003 in England and Wales.

Approval has been granted for analysis of identifiable mortality data (cause and date of death information sourced from civil registration data held by the Office for National Statistics) from patients who consented to participate in the following studies:

• A randomised trial evaluating whether adding chemotherapy and ovarian suppression increase the benefits of prolonged tamoxifen administration in women with early breast cancer. The trial launched in 1993 and closed recruitment in September 2000 – survival data continues to be gathered. 
• A 1990 randomised trial to determine how giving adjuvant hormone therapy (AHT) affects overall survival versus disease-free survival when given to women with ovarian cancer. The trial recruited 150 women between February 1990 and November 1995 with epithelial ovarian cancer. Survival data continues to be gathered. 
• A study to determine the effects of micro-metastatic disease on patient outcomes. A total of 350 patients with primary breast cancer were recruited between July 1981 and August 1986. Survival data continues to be gathered. 
• An ongoing study that follows patients with stage I seminoma who were initially treated with radiotherapy between 1960 and 1992 to analyse incidence of second cancers and specific causes of death.
• Breakthrough UK Women’s Cohort Study (Breakthrough Generations Study)
• UK Genetic Prostate Cancer Study

The personal information used from third parties for these studies is not shared with any other organisations. If you think that you may have been included in one of these studies and want further information about it, or if you wish to opt out of it, please do not hesitate to contact us via email at [email protected] or by post at: Data Protection Officer, 123 Old Brompton Road, London, SW7 3RP.