Human Growth Hormone and Creutzfeldt-Jakob Disease Resource List
Nonprofit Organizations Offering Support and Information
MAGIC (Major Aspects of Growth in Children) Foundation is a national, nonprofit organization that provides support and education about growth disorders in children and growth hormone deficiency in adults. Staff will help connect people who have similar interests or concerns.
The Human Growth Foundation (HGF) is a nonprofit organization concerned with children’s growth disorders and adult growth hormone deficiency. The HGF offers a brochure about adult growth hormone deficiency. The foundation also sponsors adult and pediatric Internet discussion forums to support the exchange of information about growth hormone deficiency and growth hormone replacement therapy. To subscribe, follow the instructions at www.hgfound.org.
The Creutzfeldt-Jakob Disease (CJD) Foundation, Inc. was created in 1993 by two families who lost relatives to CJD and the neurologist who treated the patients. This nonprofit corporation seeks to promote awareness of CJD through research and education and to reach out to people who have lost loved ones to this illness. The CJD Foundation is on the web at cjdfoundation.org.
General Information
Health Alert: Adrenal Crisis Causes Death in Some People Who Were Treated with Human Growth Hormone
NIH and Italian Scientists Develop Nasal Test for Human Prion Disease
What is a prion?—from Scientific American: Ask the Experts
Articles from Medical Journals
To conduct your own web search of the medical literature, see PubMed, a search engine of the National Library of Medicine’s (NLM) MEDLINE database. In PubMed, you can read abstracts or summaries of many articles. Another useful web resource is the NLM’s MedlinePlus, a directory of information resources that can help you research your health questions.
The articles listed below are found in medical libraries. If you do not have access to a medical library, consult your local public librarian. Many public libraries will help you obtain copies of journal articles.
Abrams JY, Schonberger LB, Belay ED, et al. Lower risk of Creutzfeldt-Jakob disease in pituitary growth hormone recipients initiating treatment after 1977. Journal of Clinical Endocrinology & Metabolism. 2011;96:E1666–E1669. Abstract available at jcem.endojournals.org/content/96/10/E1666.abstract.
Appleby BS, Lu M, Bizzi A, et al. Iatrogenic Creutzfeldt-Jakob disease from commercial cadaveric human growth hormone. Emerging Infectious Diseases. 2013;19(4):682–684.
Bell J, Parker KL, Swinford RD, Hoffman AR, Maneatis T, Lippe B. Long-term safety of recombinant human growth hormone in children. Journal of Clinical Endocrinology & Metabolism. 2010;95:167–177.
Boyd A, Klug GMJA, Schonberger LB, et al. Iatrogenic Creutzfeldt-Jakob disease in Australia: time to amend infection control measures for pituitary hormone recipients? Medical Journal of Australia. 2010;193:366–369.
Brown P, Brandel JP, Sato T, et al. Iatrogenic Creutzfeldt-Jakob disease, final assessment. Emerging Infectious Diseases. 2012;18(6):901–907.
Coulthart MB, Geschwind MD, Qureshi S, et al. A case cluster of variant Creutzfeldt-Jakob disease linked to the Kingdom of Saudi Arabia. Brain. 2016;139(Pt 10):2609-2616.
Creutzfeldt-Jakob disease surveillance in the UK. Twentieth annual report 2011. The National CJD Research & Surveillance Unit (NCJDRSU). www.cjd.ed.ac.uk/sites/default/files/report20b.pdf (PDF, 1.47 MB)
Ergun-Longmire B, Mertens AC, Mitby P, et al. Growth hormone treatment and risk of second neoplasms in the childhood cancer survivor. Journal of Clinical Endocrinology & Metabolism. 2006;91:3494–3498.
Heath CA, Cooper SA, Murray K, et al. Validation of diagnostic criteria for variant Creutzfeldt-Jakob disease. Annals of Neurology. 2010;67(6):761–770.
Hughson AG, Race B, Kraus A, et al. Inactivation of prions and amyloid seeds with hypochlorous acid. PLoS Pathog. 2016;12(9):e1005914.
Irwin DJ, Abrams JY, Schonberger LB, et al. Evaluation of potential infectivity of Alzheimer and Parkinson disease proteins in recipients of cadaver-derived human growth hormone. JAMA Neurology. 2013;70(4):462–468.
Jaunmuktane Z, Mead S, Ellis M, et al. Evidence for human transmission of amyloid-β pathology and cerebral amyloid angiopathy. Nature. 2015;525(7568):247–250.
Lodi R, Parchi P, Tonon C, et al. Magnetic resonance diagnostic markers in clinically sporadic prion disease: a combined brain magnetic resonance imaging and spectroscopy study. Brain. 2009;132(10):2669–2679.
Matsui Y, Satoh K, Mutsukura K, et al. Development of an ultra-rapid diagnostic method based on heart-type fatty acid binding protein levels in the CSF of CJD patients. Cellular and Molecular Neurobiology. 2010;30(7):991–999.
Orrú C, Bongianni M, Tonoli G, et al. A test for Creutzfeldt-Jakob disease using nasal brushings. New England Journal of Medicine. 2014;371:519–529.
Orrú, C, Groveman BR, Hughson AG, et al. Rapid and sensitive RT-QuIC detection of human Creutzfeldt-Jakob disease using cerebrospinal fluid. MBio. 2015;6(1):e02451–14.
Orrú CD, Yuan J, Appleby BS, et al. Prion seeding activity and infectivity in skin samples from patients with sporadic Creutzfeldt-Jakob disease. Science Translational Medicine. 2017;9(417). https://doi.org/10.1126/scitranslmed.aam7785.
Parchi P, Strammiello R, Notari S, et al. Incidence and spectrum of sporadic Creutzfeldt-Jakob disease variants with mixed phenotype and co-occurrence of PrPSc types: an updated classification. Acta Neuropathologica. 2009;118(5):659–671.
Prusiner SB, Woerman, AL, Mordes, DA, et al. Evidence for α-synuclein prions causing multiple system atrophy in humans with parkinsonism. Proceedings of the National Academy of Sciences of the United States of America. 2015;112(38):E5308-5317.
Quadrio I, Ugnon-Café S, Dupin M, et al. Rapid diagnosis of human prion disease using streptomycin with tonsil and brain tissues. Laboratory Investigation. 2009;89(4):406–413.
Ritchie DL, Adlard P, Peden AH, et al. Amyloid-β accumulation in the CNS in human growth hormone recipients in the UK. Acta Neuropathologica. 2017;134(2): 221–240.
Ritchie DL, Barria MA, Peden AH, et al. UK Iatrogenic Creutzfeldt-Jakob disease: investigating human prion transmission across genotypic barriers using human tissue-based and molecular approaches. Acta Neuropathologica. 2017;133(4):579–595. https://doi.org/10.1007/s00401-016-1638-x.
Sanchez-Juan P, Cousens SN, Will RG, van Duijn CM. Source of variant Creutzfeldt-Jakob disease outside United Kingdom. Emerging Infectious Diseases. 2007;13:1166–1169.
Tian HJ, Zhang JT, Lang SY, Wang XQ. MRI sequence findings in sporadic Creutzfeldt-Jakob disease. Journal of Clinical Neuroscience. 2010;17(11):1378–1380.
Vranac T, Bresjanac M. Metabolic aspects of prion diseases: an overview. Current Drug Targets. 2010;11(10):1207–1217.
Wilton P, Mattsson AF, Darendeliler F. Growth hormone treatment in children is not associated with an increase in the incidence of cancer: experience from KIGS (Pfizer International Growth Database). Journal of Pediatrics. 2010;157(2):265–270.
Zerr K, Kallenberg K, Summers DM, et al. Updated clinical diagnostic criteria for sporadic Creutzfeldt-Jakob disease. Brain. 2009;132(10):2659–2668.
Zou S, Fang CT, Schonberger LB. Transfusion transmission of human prion diseases. Transfusion Medicine Reviews. 2008;22:58–69.
This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.