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Endocrine & Metabolic Disease Organizations

Many organizations provide support to patients and medical professionals.  View the full list of Endocrine and Metabolic Disease Organizations (PDF, 269 KB).

Human Growth Hormone and Creutzfeldt-Jakob Disease Resource List

On this page:

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.


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 (Summary)

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

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


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 http://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.

Creutzfeldt-Jakob disease surveillance in the UK. Twentieth annual report 2011. The National CJD Research & Surveillance Unit (NCJDRSU). www.cjd.ed.ac.uk/documents/report20.pdf.

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.

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.

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.

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.

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 information may contain content about medications and, when taken as prescribed, the conditions they treat. When prepared, this content included the most current information available. For updates or for questions about any medications, contact the U.S. Food and Drug Administration toll-free at 1-888-INFO-FDA (1-888-463-6332) or visit www.fda.gov. Consult your health care provider for more information.


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.

This information is not copyrighted. The NIDDK encourages people to share this content freely.


November 2014