Human Growth Hormone & 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

National Hormone and Pituitary Program (NHPP): Information for People Treated with Pituitary Human Growth Hormone

Creutzfeldt-Jakob Disease. Fact sheet of the National Institute of Neurological Disorders and Stroke, National Institutes of Health (NIH)

NIH and Italian Scientists Develop Nasal Test for Human Prion Disease

What is a prion?—from Scientific American: Ask the Experts

Recommendations to Reduce the Possible Risk of Transmission of Creutzfeldt-Jakob Disease and Variant Creutzfeldt-Jakob Disease by Blood and Blood Components. U.S. Food and Drug Administration, August 2020.

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, Mills JL, Schonberger LB, Chang D, Maddox RA, Belay ED, Leschek EW. Suicides in National Hormone Pituitary Program Recipients of cadaver-derived human growth hormone. J Endo Society. 2023; 7: 1-7. doi.org/10.1210/jendso/bvad130.

Alloush TK, Alloush AT, Abdelazeem Y, Shokri HM, Abdulghani KO, Elzoghby A. Creutzfeldt-Jakob disease in a post-COVID-19 patient: did SARS-CoV-2 accelerate the neurodegeneration? Egypt J Neurol Psychiatr Neurosurg. 2023;59(1):69. doi: 10.1186/s41983-023-00666-y. Epub 2023 May 22. PMID: 37251549 Free PMC article.

Beretta S, Stabile A, Balducci C, DiFrancesco JC, Patruno A, Rona R, Bombino M, Capraro C, Andreetta F, Cavalcante P, Moda F, Citerio G, Foti G, Bogliun G, Ferrarese C. COVID-19-associated immune-mediated encephalitis mimicking acute-onset Creutzfeldt-Jakob disease. Ann Clin Transl Neurol. 2021 Dec;8(12):2314-2318. doi: 10.1002/acn3.51479. Epub 2021 Nov 26. PMID: 34825771 Free PMC article.

Ciolac D. Racila R, Duarte C, Vasilieva M, Manea D, Gorincioi N, Condrea A, Crivorucica I, Zota E, Efremova D, Civorucica V, Ciocanu M, Movila A, Groppa SA. Clinical and Radiological Deterioration in a Case of Creutzfeldt-Jakob Disease following SARS-CoV-2 Infection: Hints to Accelerated Age-Dependent Neurodegeneration. Biomedicines. 2021 Nov 19;9(11):1730. doi: 10.3390/biomedicines9111730. PMID: 34829958 Free PMC article

Hayman DTS, Baker MG. Low risk of variant Creutzfeldt-Jakob disease transmission from blood transfusions in Aotearoa New Zealand suggests donor exclusion policies can be relaxed. N Z Med J. 2023 Aug 25;136(1581):66-70.PMID: 37619229

Lukiw WJ, Jaber VR, Pogue AI, Zhao Y. SARS-CoV-2 Invasion and Pathological Links to Prion Disease. Biomolecules. 2022 Sep 7;12(9):1253. doi: 10.3390/biom12091253. PMID: 36139092 Free PMC article

Pritzkow S, Ramirez F, Lyon A, Schulz PE, Appleby B, Moda F, Ramirez S, Notari Silvio, Pierluigi G, Soto C.  Detection of prions in the urine of patients affected by sporadic Creutzfeldt-Jakob disease Ann Clin Transl Neurol. 2023 Sept; 1-8. doi.org/10.1002/acn3.51919

Stehmann C, Senesi M, Sarros S, McGlade A, Lewis V, Simpson M, Klug G, McLean C, Masters CL, Collins S. Creutzfeldt-Jakob disease surveillance in Australia: update to 31 December 2021. Commun Dis Intell (2018). 2022 Aug 18;46. doi: 10.33321/cdi.2022.46.53. PMID: 35981813

Thomas S, Roberts B, Domanović D, Kramer K, Klochkov D, Sivasubramaniyam S, Miloslavich D, Plançon JP, Rossi F, Misztela D, Kirkpatrick L, Miflin G, Birchall J, McLintock L, Knight R. Safety profile of plasma for fractionation donated in the United Kingdom, with respect to variant Creutzfeldt-Jakob disease. Vox Sang. 2023 May;118(5):345-353. doi: 10.1111/vox.13416. Epub 2023 Mar 7.PMID: 36880992 Review.

Watson N, Kirby J, Kurudzhu H, Leitch M, MacKenzie J, Smith-Bathgate B, Smith C, Summers D, Green AJE, Pal S. Impact of the COVID-19 pandemic on Creutzfeldt-Jakob disease surveillance and patient care in the United Kingdom. Eur J Neurol. 2022 Apr;29(4):1222-1226. doi: 10.1111/ene.15228. Epub 2022 Jan 5. PMID: 34941016 Free PMC article.

Zhao J, Rostgaard K, Lauwers E, et al. Intracerebral hemorrhage among blood donors and their transfusion recipients. JAMA Network.  2023 Sept.; 330: 941-950. doi:10.1001/jama.2023.14445

Zou W-Q, Gambetti P. (2023). Prions and Diseases, 2^nd Edition. Biomedicine, Springer Nature, Cham, Switzerland.

Banerjee G, Samra K, Adams ME, et al. Iatrogenic cerebral amyloid angiopathy: an emerging clinical phenomenon (bmj.com). J Neurol Neurosurg Psychiatry. 2022; 93: 693-700.

Collinge J, et al. Prion protein monoclonal antibody (PRN100) therapy for Creutzfeldt–Jakob disease: evaluation of a first-in-human treatment programme. The Lancet Neurol. 2022; 21(4):342-354.

Kim Y, Jeong B. Creutzfeldt-Jakob Disease Incidence, South Korea, 2001–2019. Emerg. Infect Dis. 2022; 28(9):1863-1866.

Zerr I. Laboratory Diagnosis of Creutzfeldt–Jakob Disease. N Engl J Med. 2022; 386: 1345-1350.

Bizzi A, Pascuzzo R, Blevins J, et al. Subtype Diagnosis of Sporadic Creutzfeldt-Jakob Disease with Diffusion Magnetic Resonance Imaging. Ann Neurol. 2021; 89: 560-572. (Also see commentary: Fyfe I. Machine learning enables subtyping of sporadic CJD. Nat Rev Neurol. 2021; 17:64.)

Carta M, Aguzzi A. Molecular foundations of prion strain diversity. Curr Opin Neurobiol. 2021; 72: 22-31.

Asher DM, Belay E, Bigio E, et al. Risk of Transmissibility from Neurodegenerative Disease-Associated Proteins: Experimental Knowns and Unknowns J Neuropathol Exp Neurol. 2020; 79: 1141-1146.

Bizzi A, Pascuzzo R, Blevins J, et al. Evaluation of a New Criterion for Detecting Prion Disease with Diffusion Magnetic Resonance Imaging. JAMA Neurol. 2020; 77: 1141-1149.

Brandel JP, Vlaicu MB, Culeux A, et al. Variant Creutzfeldt-Jakob Disease Diagnosed 7.5 Years after Occupational Exposure. N Engl J Med. 2020; 383: 83-85.

Rhoads DD, Wrona A, Foutz A, et al. Diagnosis of Prion Diseases by RT-QuIC Results in Improved Surveillance. Neurology. 2020; 95: e1017-e1026.

Sánchez-González L, Maddox RA, Lewis LC, et al. Human Prion Disease Surveillance in Washington State, 2006-2017. JAMA Netw Open. 2020; 3: e2020690.

Raymond, RJ, Zhao, HT, Race, B, et. al. Antisense oligonucleotides extend survival of prion-infected mice. JCI Insight. 2019;4(16):e131175.

Honda H, Matsumoto M, Masahiro S, et al. Frequent detection of pituitary-derived PrP^res in human prion diseases. J Neuropathol Exp Neurol. 2019;78(10):922-929.

Peckeu L, Brandel JP, Welaratne A, et. al. Factors influencing the incubation of an infectious form of Creutzfeldt-Jakob disease. Clin Infect Dis. 2019;ciz692: https://doi.org/10.1093/cid/ciz692.

Hervé D, Porché M, Cabrejo L, et al. Fatal Aβ cerebral amyloid angiopathy 4 decades after a dural graft at the age of 2 years. Acta Neuropathologica. 2018;135(5):801–803.

Jucker M, Walker LC. Propagation and spread of pathogenic protein assemblies in neurodegenerative diseases. Nature Neuroscience. 2018;21(10):1341–1349.

Orrú CD, Soldau K, Cordano C, et al. Prion seeds distribute throughout the eyes of sporadic Creutzfeldt-Jakob disease patients. mBio. 2018;9(6):e02095-18.

Purro SA, Farrow MA, Linehan J, et. al. Transmission of amyloid- β protein pathology from cadaveric pituitary growth hormone. Nature. 2018;594;415-419

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).

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.

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.

Hughson AG, Race B, Kraus A, et al. Inactivation of prions and amyloid seeds with hypochlorous acid. PLoS Pathog. 2016;12(9):e1005914.

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.

Orrú CD, 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.

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.

Orrú CD, Bongianni M, Tonoli G, et al. A test for Creutzfeldt-Jakob disease using nasal brushings. New England Journal of Medicine. 2014;371:519–529.

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.

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.

Brown P, Brandel JP, Sato T, et al. Iatrogenic Creutzfeldt-Jakob disease, final assessment. Emerging Infectious Diseases. 2012;18(6):901–907.

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 academic.oup.com/jcem/article/96/10/E1666/2836371.

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)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.