Register Research Panel
The amended Human Fertilisation and Embryology Act 1990, together with the Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations 2010, give the HFEA the power to grant research institutions access to HFEA Register data. The Authority decided to delegate the decision making associated with this process to a group of executive officers, the Register Research Panel, while retaining oversight of this function.
The Register Research Panel has delegated powers to authorise access to Register data, to place conditions upon authorisation, and to suspend or revoke authorisation. The Panel is chaired by the Director of Compliance and Information.
Access to identifying Register data is considered as a method of last resort. A number of tests will need to be met in order for the Panel to authorise access to identifying data about patients, partners and children born as a consequence of treatment. These are set out in the Panel's decision tree. The Panel is responsible for ensuring that proposed research projects cannot be fulfilled by reference to anonymised HFEA Register data.
In addition to liaising with applicants, the Panel works with experts in the fields of medical and social research. A Memorandum of Understanding is in place with the National Information Governance Board's Ethics and Confidentiality Committee which has a role in considering applications to access HFEA Register data for medical research purposes.
Regular reports on the operation of the Register Research Panel and the progress of authorised research projects will be submitted by the Panel to the Authority in its capacity as the HFEA's Oversight Committee.
Register Research Panel members
- Nick Jones, Director of Compliance and Information (Chair)
- David Moysen, Head of IT
- Sam Hartley, Head of Governance and Licensing (Caldicott Guardian)
Register Research Panel minutes
- Meeting minutes - 10 October 2013 (pdf 23kB)
- Meeting minutes - 15 October 2012 (pdf 208kB)
- Meeting minutes - 8 August 2012 (pdf 96Kb)
- Meeting minutes - 2 August 2011 (pdf 83kB)
- Meeting minutes - 3 November 2010 (pdf 671kB)
- Meeting minutes - 11 October 2010 (pdf 566kB)
- Meeting minutes - 13 September 2010 (pdf 677kB)
- Meeting minutes - 16 July 2010 (pdf 513kB)
- Meeting minutes - 8 June 2010 (pdf 664kB)
Recently approved projects
- EpiHealth Outcomes Project (pdf 140kB)
- 'Development and validation of statistical models to predict pregnancy outcomes following in-vitro fertilization (IVF) treatment' (pdf 68kB)
- 'Effects of Ethnic Background on the Clinical Success Rate of Assisted Reproductive Treatment' (pdf 176 kB)
- ‘Do children born after assisted reproduction have a higher mortality than those born after spontaneous conception? A population based pilot linkage study.’ (pdf 144Kb)
- 'Are children born after assisted reproduction at increased risk of cancer? A population based linkage study' (pdf 7kB)
- 'Do hormonal treatments for assisted reproduction increase risks of cancer or mortality in women? A national cohort study' (pdf 7kB)
Page last updated: 07 February 2014