Department of Health CJD Guidance

Department of Health practical guide for health workers caring for someone with CJD.

CJD: public health action following report of new case or person at increased risk Go to website: DoH CJD Guidance

Go to website: www.gov.uk

Guidelines for Social workers

In conjunction with the Association of Directors of Social Services the CJD Support Network have produced guidelines for social workers. Click here to view the Social workers guidelines

Long-term pituitary growth hormone study at UCL Institute of Child Health and Great Ormond Street Hospital

Background

Between 1959 and 1985, nearly 2000 individuals in the UK were treated with human growth hormone (hGH) extracted from the pituitary glands of people who had died. This type of growth hormone is sometime called cadaveric growth hormone (c-hGH) or pituitary-derived growth hormone. The treatment was given for severe short stature, particularly growth hormone deficiency, and it was given by several injections per week over months or years.

Creutzfeldt-Jakob Disease

In 1985, one of the people treated with this c-hGH died from the rare brain disease Creutzfeldt-Jakob Disease (CJD), and a link to the treatments was suspected, so the use of this type of hGH was stopped. Further cases of CJD occurred over subsequent years, and the link was established beyond doubt. Cases occurred in other countries around the world, related to c-hGH produced abroad. Since this type of c-hGH was withdrawn, a synthetic growth hormone has been used and this does not carry this risk of developing CJD.

CJD is a prion disease, in which an abnormal or rogue form of a normal body protein causes a progressive and fatal neurological illness. We assume that transmission of this rogue protein was from the pituitaries of the gland donors. This type of CJD is iatrogenic (iCJD), meaning it was caused by a medical accident.

Our role

The research work at the Institute of Child Health was established after the ending of the c-hGH treatment programme, to keep records of all the people treated, the help informs them of their risk of getting CJD, and to advise and help with the organisation of services should they develop CJD. The Department of Health funds this work, and enables us to provide a National Helpline for people concerned about c-hGH treatment and the risk of iCJD. Some of the families of people who have developed CJD caused by c-hGH treatment are eligible for compensation from the Department of Health, and we can advise about whom to contact.

Cases of CJD continue to occur, with very long intervals (decades) from the time of treatment to illness onset. There have been 77 cases in the UK up to August 2015. We have been involved with most of these people and their families.

We talk to and visit families, and visit GP surgeries, hospitals and hospices to help carers understand this type of CJD. We work closely with neurologists who see patients with possible CJD secondary to c-hGH , and in particular collaborate with the National Prion Clinic , and the National CJD Research and Surveillance Unit.

Further advice about c-hGH treatment and the risk of iCJD can be obtained from:

Ms Leah Davidson, Counsellor and Care Co-ordinator
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Dr Peter Adlard, Senior Research Associate and Honorary Consultant Paediatrician
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To contact Dr Adlard or Ms Davidson at the Institute of Child Health directly call 020 7404 0536 (we respond to any messages rapidly).