The Phenylketonuria (PKU) and Congenital Hypothyroidism (CHT) Registers

Congenital Hypothyroidism (CHT) Register

3rd May 2013

When the UK Newborn Screening Programme was established 11 years ago, we became custodians of the Register of people living with congenital hypothyroidism.  The Register contained information about some people diagnosed with the condition from the late 1970’s. The Register was not continuous and was discontinued in 1998.

As part of a review of whether we should continue to retain information, we consulted with a number of stakeholders including researchers, doctors and patient advocacy groups.

The agreed value of the data as a source of information about people living with the condition was extremely limited and it was no longer a useful or feasible resource for research into the condition.

We therefore took the decision, ratified by the Department of Health, to destroy all information we held, including the Register. The Register has now been destroyed.

We understand this decision may disappoint some people, but we felt that, under the circumstances, there was no alternative.

Click if you would like more information about the CHT Register and the publications based on information included in the register.

The Phenylketonuria (PKU) Register

6th September 2012

When the UK Newborn Screening Programme Centre was established 10 years ago, we took over the Register of people living with phenylketonuria. The Register contained information about people diagnosed with the condition from the 1960s until the early 2000s.

As part of a review of whether we should continue to retain information, we consulted with a number of people including researchers, doctors and as many patients as we could contact. We asked people on whom we held data for their permission to continue holding their information in different formats. Unsurprisingly, many of those on the Register were no longer contactable at the addresses we had for them. We have only been able to obtain permission to keep the data in any format from one in five people (659/3131).

As a result, we had to remove all information about most people from the Register and any other records we held. This meant that we would no longer hold a complete record of those living with PKU in the UK. The value of the data as a source of information about people living with the condition was therefore extremely limited and it was no longer a useful resource for research into the condition.

We therefore took the decision, ratified by the Department of Health, to destroy all information we held, including the Register. The Register has now been destroyed.

We understand this decision may disappoint some people, but we felt that, under the circumstances, there was no alternative,

Click if you would like more information about the PKU Register and the publications based on information included in the register.

If you would like to speak to someone at the Programme Centre about the registers, please contact:

Christine Cavanagh

Antenatal and Newborn Screening Programme Centre

Ph: 0207 829 7884

Email: uknewbornscreen@gosh.nhs.uk