American Academy of Ophthalmology, "Laser Surgery of the Eye," and
"Cryotherapy," AAO, P.O. Box 7424, San Francisco, CA 94120-7424. +1
415 561-8500.
http://www.eyenet.org
American Brain Tumor Association, "Dictionary for Brain Tumor
Patients" and "A Primer of Brain Tumors," ABTA, 2720 River Road, Suite
146, Des Plaines, IL 60018. (800) 886-2282 or +1 708 827-9910; Fax: +1
708 827-9918. info@abta.org,
://www.abta.org
ASHG Statement of the American Society of Human Genetics on genetic
testing for breast and ovarian cancer predisposition. Summary of
recommendations. Am J Hum Genet 1994,
56:327-331.
http://www.faseb.org/genetics/ashg/policy/pol-11.htm
ASHG Points to consider: ethical, legal, and psychosocial implications of genetic testing on children and adolescents. Am J Hum Genet 1995, 57:1233-1241.
http://www.faseb.org/genetics/ashg/policy/pol-13.htm.
Blodi, Christopher, et al., "Direct and Feeder Vessel Photocoagulation
of Retinal Angiomas with Dye Yellow Laser," Ophthalmology, 97 (1990)
791-797, with commentary by L. Fingerman and D. Saggan.
Chauveau, D., et al, "Renal involvement in von Hippel-Lindau disease."
Kidney Int. 1996 50:944-951.
Choyke, P.L., et al., "The Natural History of Renal Lesions in von
Hippel-Lindau Syndrome." Am J Roentgen 1992 159:1229-1234.
Choyke, Glenn, et al., "Von Hippel-Lindau Disease: Genetic, Clinical, and Imaging Features." Radiology, March 1995, pp. 639-641.
http://www.cc.nih.gov/ccc/papers/vonhip/toc.html
Collins, Debra, Information for Genetic Professionals home page
http://www.kumc.edu/gec/prof/kugenes.html
Diet, Nutrition, and Cancer Prevention: The Good News, U.S. National
Institutes of Health, publication 87-2878, and the Five-a-Day
Program. 1-800-4CANCER.
Duan, Linehan, Klausner et al., "Characterization of the VHL tumor suppressor gene product." Proc. Natl. Acad. Sci., USA 1995 92:6459-6463.
Glenn, G.M., et al, "Von Hippel-Lindau Disease: Clinical Review and
Molecular Genetics," Problems in Urology 1990 42:312-330.
Glenn et al, "Screening for von Hippel-Lindau Disease by DNA
Polymorphism Analysis." JAMA 1992 267:1226-1231.
Glenn et al, "Von Hippel-Lindau (VHL) disease: distinct phenotypes
suggest more than one mutant allele at the VHL locus."
Hum. Genet. 1991 87:207-210.
Green et al, "Von Hippel-Lindau Disease in a Newfoundland kindred,"
Canadian Med. Assn. Journal 1986 134:133-146.
Holtzman NA Johns Hopkins Medical Information Network: Interim principles of the task force on genetic testing of the NIH-DOE working group on ethical, legal and social implications of human genome research. Mar 1996
http://infonet.welch.jhu.edu/policy/genetics/index.html
Jennings et al, "Von Hippel-Lindau Disease in a large British family:
Clinicopathological features and recommendations for screening and
follow-up." Q. J. Medicine 1988 66:251:233-249.
Jennings and Gaines, "The abdominal manifestation of von Hippel-Lindau
disease and a radiological screening protocol for an affected family."
Clin-Radiol. 1988 39:4:362-267.
Kahle, W., H. Leonhardt, and W. Platzer, Color Atlas and Textbook of
Human Anatomy. Georg Thieme Pub., Stuttgart, 1978.
Kempermann, G. et al, "Deafness due to Bilateral Endolymphatic Sac
Tumors in a case of von Hippel-Lindau Syndrome." Journal of Neurology,
Neurosurgery, and Psychiatry 1996 61:318-320.
Lamiell et al, "Von Hippel Lindau Disease Affecting 43 Members of a
Single Kindred." Medicine 1989 68:1-29.
Latif, F., et al., "Identification of the von Hippel-Lindau Disease
Tumor Suppressor Gene." Science 1993 260:1317-1320.
Lo, William W. M. et al, "Endolymphatic Sac Tumors: Raiologic
Appearance." Radiology 1993 189:1:199-204.
Maher, E. A., et al, "Von Hippel-Lindau disease: a genetic
study,"J. Med. Genet. 1991 28:443-447.
Maher et al., "Clinical features and natural history of von
Hippel-Lindau disease," Q. J. Medicine 1990 77:1151-1163.
Maher et al., "Phenotypic expression in von Hippel-Lindau disease:
Correlations with germline VHL gene mutations. J. Med. Genetics, 1996
33:328-332.
McCue, Kathleen, and Ron Bonn, How to Help Children Through a Parent's
Serious Illness. St. Martin's Press, 1994.
Neumann, H.P.H., et al, "Lesions of the Central Nervous System in von
Hippel-Lindau Syndrome." J. Neurol Neurosurg Psychiatr 1992
55:898-901.
Neumann, H.P.H. et al, "Pancreatic Lesions in the von Hippel-Lindau
Syndrome." Gastroenterology 1991 101:465-471.
Neumann, H.P.H. et al, "Pheochromocytomas, Multiple Endocrine
Neoplasia Type 2, and von Hippel-Lindau Disease." N. E. J. Med. 1993
329:21:1531-1538.
Ostrer H et al, "Insurance and genetic testing: where are we now?" Am
J Hum Genet 1993, 52:565-5777.
Price, E. B., "Papillary Cystadenoma of the Epididymis."
Arch. Pathol. 1971 91:456-470.
Privacy Commission of Canada: Genetic Testing and Privacy (1992)
Ottawa, CANADA, ISBN 0-662-58966-1
Resche, F., et al, "Haemangioblastoma, Haemangioblastomatosis, and von
Hippel-Lindau Disease." Advances and Technical Standards in
Neurosurgery, 1993 20:197-303
Richard, S., et al, "La maladie de von Hippel-Lindau."
Médicine-Science 1995 11:43-51.
Richard, S., "La maladie de von Hippel-Lindau," Hérédité et cancer,
ed. Bignon Y. J., (Lavoisier, Paris, 1997).
Richard, S., et al, "Pheochromocytoma as the first manifestation of
von Hippel-Lindau disease." Surgery 1994 116:1076-1081
Richard, S., et al, "Renal Lesions and Pheochromocytoma in von
Hippel-Lindau Disease." Advances in Nephrology, 23 (1994) Mosby-Year
Book.
Schmidt, D., and H. Neumann, "Retinal Vascular Hamartoma in von
Hippel-Lindau Disease." Arch. Ophthalmol, 1995 113:1163-1167.
Seizinger, B., "Von Hippel-Lindau Disease: A Model system for the
Isolation of 'Tumor Suppressor' Genes Associated with the Primary
Genetic Mechanisms of Cancer." Advances in Nephrology, 23 (1994)
Mosby-Year Book.
Steinbach, Novick, et al., "Treatment of Renal Cell Carcinoma in von
Hippel-Lindau Disease: A Multi-Center Study." Journal of Urology, June
1995.
Von Hippel-Lindau Family Alliance Home Page (information for families,
clinicians, researchers),
http://www.vhl.org
Walther, McC., et al., "Parenchymal Sparing Surgery in patients with
hereditary renal cell carcinoma." J. Urology 1995 153:913-916.
Welch, R. B., "Von Hippel-Lindau Disease: The Recognition and
Treatment of Early Angiomatosis Retinae and the use of Cryosurgery as
an Adjunct to Therapy." Trans. Am. Ophthalmol. Soc. 1970 68:367-424.
Zbar, Berton, Chief, Frederick Cancer Research Facility, Role of the National Cancer Institute in kidney cancer research
http://www.ncifcrf.gov/kidney/
Dora Resende Alves