Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance

Anthony B. Daniels; Amit Tirosh; Kristin Huntoon; Gautam U. Mehta; Philippe E. Spiess; Debra L. Friedman; Steven G. Waguespack; Jill E. Kilkelly; Surya Rednam; Sumit Pruthi; Eric A. Jonasch; Laura Baum; Jad Chahoud

doi:10.1002/cncr.34896

Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance

Anthony B. Daniels, Amit Tirosh, Kristin Huntoon, Gautam U. Mehta, Philippe E. Spiess, Debra L. Friedman, Steven G. Waguespack, Jill E. Kilkelly, Surya Rednam, Sumit Pruthi, Eric A. Jonasch, Laura Baum, Jad Chahoud

Research output: Contribution to journal › Article › peer-review

3 Scopus citations

Original language	English (US)
Pages (from-to)	2927-2940
Number of pages	14
Journal	Cancer
Volume	129
Issue number	19
DOIs	https://doi.org/10.1002/cncr.34896
State	Published - Oct 1 2023

Keywords

VHL
endolymphatic sac tumors
hemangioblastomas
kidney cancer
pancreatic neuroendocrine tumors
pheochromocytoma
renal cell cancer
von Hipple-Lindau syndrome

ASJC Scopus subject areas

Oncology
Cancer Research

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10.1002/cncr.34896

Cite this

Daniels, A. B., Tirosh, A., Huntoon, K., Mehta, G. U., Spiess, P. E., Friedman, D. L., Waguespack, S. G., Kilkelly, J. E., Rednam, S., Pruthi, S., Jonasch, E. A., Baum, L., & Chahoud, J. (2023). Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance. Cancer, 129(19), 2927-2940. https://doi.org/10.1002/cncr.34896

Daniels, AB, Tirosh, A, Huntoon, K, Mehta, GU, Spiess, PE, Friedman, DL, Waguespack, SG, Kilkelly, JE, Rednam, S, Pruthi, S, Jonasch, EA, Baum, L & Chahoud, J 2023, 'Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance', Cancer, vol. 129, no. 19, pp. 2927-2940. https://doi.org/10.1002/cncr.34896

@article{92f14828a5094121bec0f14dc237c05e,

title = "Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance",

keywords = "VHL, endolymphatic sac tumors, hemangioblastomas, kidney cancer, pancreatic neuroendocrine tumors, pheochromocytoma, renal cell cancer, von Hipple-Lindau syndrome",

author = "Daniels, {Anthony B.} and Amit Tirosh and Kristin Huntoon and Mehta, {Gautam U.} and Spiess, {Philippe E.} and Friedman, {Debra L.} and Waguespack, {Steven G.} and Kilkelly, {Jill E.} and Surya Rednam and Sumit Pruthi and Jonasch, {Eric A.} and Laura Baum and Jad Chahoud",

note = "Funding Information: We thank all the adult patients with von Hippel-Lindau and the family members of pediatric patients who were included in the International VHL Surveillance Guidelines Consortium. We also thank the VHL Alliance for organizational support related to this project. This work was supported in part by the National Eye Institute (NIH/NEI K08EY027464 [ABD]). The members of the International VHL Surveillance Imaging Consortium include the following: Ashok Asthagiri, University of Virginia, United States (Central Nervous System Subcommittee); Sanjeev Bajaj, University of Alabama at Birmingham, United States (Radiology Subcommittee); Laura Van Metre Baum, Yale University School of Medicine, United States (Writing Committee); Ronald Boris, Indiana University Medical Center, United States (Kidney Subcommittee); John Butman, National Institutes of Health, United States (Endolymphatic Sac Subcommittee; Radiology Subcommittee); Jad Chahoud, Moffit Cancer Center, United States (Kidney Subcommittee; Writing Committee); Emmanuel Y. Chang, Baylor College of Medicine, United States (Ophthalmology Subcommittee); Emily Y. Chew, National Eye Institute, United States (Ophthalmology Subcommittee); Nick Cost, University of Colorado, United States (Pediatrics Subcommittee); Anthony B. Daniels, Vanderbilt University Medical Center, United States (Chair of the Overall Guidelines Committee; Chair of the Ophthalmology Subcommittee); Tobias Else, University of Michigan, United States (Endocrine Subcommittee); Debra L. Friedman, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Pediatrics Subcommittee); Paul Gidley, The University of Texas MD Anderson Cancer Center, United States (Endolymphatic Sac Subcommittee); Dan S. Gombos, The University of Texas MD Anderson Cancer Center, United States (Ophthalmology Subcommittee); Michael B. Gorin, UCLA Medical Center, United States (Ophthalmology Subcommittee); Thorvardur R. Halfdanarson, Mayo Clinic, United States (Pancreas Subcommittee); Pascal Hammel, H{\^o}pital Beaujon, University of Paris, France (Pancreas Subcommittee); Mukesh Harasinghani, Harvard/Mass General Hospital, United States (Radiology Subcommittee); Kristin Huntoon, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Central Nervous System Subcommittee); Othon Iliopoulos, Harvard/Mass General Hospital, United States (Kidney Subcommittee); Eric Jonasch, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Kidney Subcommittee); Xavier Keutgen, University of Chicago Medical Center, United States (Pancreas Subcommittee); Jill E. Kilkelly, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Jeffrey Kim, Georgetown University, United States (Endolymphatic Sac Subcommittee); Rachel van Leeuwaarde, University Medical Center Utrecht, Netherlands (Pancreas Subcommittee); Jacques Lenders, Radboud University, Netherlands (Endocrine Subcommittee); Thera Links, University of Groningen, Netherlands (Pancreas Subcommittee; Endocrine Subcommittee); Russell Lonser, The Ohio State University, United States (Endolymphatic Sac Subcommittee; Central Nervous System Subcommittee); Rimas Lukas, Northwestern University Medical Center, United States (Central Nervous System Subcommittee); Ian McCutcheon, The University of Texas MD Anderson Cancer Center, United States (Central Nervous System Subcommittee); Gautam Mehta, The House Institute/National Institutes of Health, United States (Overall Guidelines Committee; Chair of the Endolymphatic Sac Subcommittee); Mia Miller, The House Institute, United States (Endolymphatic Sac Subcommittee); Karel Pacek, National Institutes of Health, United States (Endocrine Subcommittee); Dhaval Patel, National Cancer Institute, United States (Pancreas Subcommittee); Ivan Pedrosa, University of Texas, Southwestern MC, United States (Radiology Subcommittee); Sumit Pruthi, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Radiology Subcommittee); W. Kimryn Rathmell, Vanderbilt University Medical Center, United States (Kidney Subcommittee); Surya Rednam, Baylor College of Medicine, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Matt Shepard, Allegheny Health Network, United States (Central Nervous System Subcommittee); Carol L. Shields, Wills Eye Hospital, United States (Ophthalmology Subcommittee); Philippe Spiess, Moffit Cancer Center, United States (Overall Guidelines Committee; Chair of the Kidney Subcommittee); Amit Tirosh, Sheba Medical Center/Tel Aviv University, Israel (Overall Guidelines Committee; Chair of the Pancreas Subcommittee); Steven Waguespack, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Endocrine Subcommittee); Henry E. Wiley, National Eye Institute, United States (Ophthalmology Subcommittee). Funding Information: We thank all the adult patients with von Hippel‐Lindau and the family members of pediatric patients who were included in the International VHL Surveillance Guidelines Consortium. We also thank the VHL Alliance for organizational support related to this project. This work was supported in part by the National Eye Institute (NIH/NEI K08EY027464 [ABD]). The members of the International VHL Surveillance Imaging Consortium include the following: Ashok Asthagiri, University of Virginia, United States (Central Nervous System Subcommittee); Sanjeev Bajaj, University of Alabama at Birmingham, United States (Radiology Subcommittee); Laura Van Metre Baum, Yale University School of Medicine, United States (Writing Committee); Ronald Boris, Indiana University Medical Center, United States (Kidney Subcommittee); John Butman, National Institutes of Health, United States (Endolymphatic Sac Subcommittee; Radiology Subcommittee); Jad Chahoud, Moffit Cancer Center, United States (Kidney Subcommittee; Writing Committee); Emmanuel Y. Chang, Baylor College of Medicine, United States (Ophthalmology Subcommittee); Emily Y. Chew, National Eye Institute, United States (Ophthalmology Subcommittee); Nick Cost, University of Colorado, United States (Pediatrics Subcommittee); Anthony B. Daniels, Vanderbilt University Medical Center, United States (Chair of the Overall Guidelines Committee; Chair of the Ophthalmology Subcommittee); Tobias Else, University of Michigan, United States (Endocrine Subcommittee); Debra L. Friedman, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Pediatrics Subcommittee); Paul Gidley, The University of Texas MD Anderson Cancer Center, United States (Endolymphatic Sac Subcommittee); Dan S. Gombos, The University of Texas MD Anderson Cancer Center, United States (Ophthalmology Subcommittee); Michael B. Gorin, UCLA Medical Center, United States (Ophthalmology Subcommittee); Thorvardur R. Halfdanarson, Mayo Clinic, United States (Pancreas Subcommittee); Pascal Hammel, H{\^o}pital Beaujon, University of Paris, France (Pancreas Subcommittee); Mukesh Harasinghani, Harvard/Mass General Hospital, United States (Radiology Subcommittee); Kristin Huntoon, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Central Nervous System Subcommittee); Othon Iliopoulos, Harvard/Mass General Hospital, United States (Kidney Subcommittee); Eric Jonasch, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Kidney Subcommittee); Xavier Keutgen, University of Chicago Medical Center, United States (Pancreas Subcommittee); Jill E. Kilkelly, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Jeffrey Kim, Georgetown University, United States (Endolymphatic Sac Subcommittee); Rachel van Leeuwaarde, University Medical Center Utrecht, Netherlands (Pancreas Subcommittee); Jacques Lenders, Radboud University, Netherlands (Endocrine Subcommittee); Thera Links, University of Groningen, Netherlands (Pancreas Subcommittee; Endocrine Subcommittee); Russell Lonser, The Ohio State University, United States (Endolymphatic Sac Subcommittee; Central Nervous System Subcommittee); Rimas Lukas, Northwestern University Medical Center, United States (Central Nervous System Subcommittee); Ian McCutcheon, The University of Texas MD Anderson Cancer Center, United States (Central Nervous System Subcommittee); Gautam Mehta, The House Institute/National Institutes of Health, United States (Overall Guidelines Committee; Chair of the Endolymphatic Sac Subcommittee); Mia Miller, The House Institute, United States (Endolymphatic Sac Subcommittee); Karel Pacek, National Institutes of Health, United States (Endocrine Subcommittee); Dhaval Patel, National Cancer Institute, United States (Pancreas Subcommittee); Ivan Pedrosa, University of Texas, Southwestern MC, United States (Radiology Subcommittee); Sumit Pruthi, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Radiology Subcommittee); W. Kimryn Rathmell, Vanderbilt University Medical Center, United States (Kidney Subcommittee); Surya Rednam, Baylor College of Medicine, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Matt Shepard, Allegheny Health Network, United States (Central Nervous System Subcommittee); Carol L. Shields, Wills Eye Hospital, United States (Ophthalmology Subcommittee); Philippe Spiess, Moffit Cancer Center, United States (Overall Guidelines Committee; Chair of the Kidney Subcommittee); Amit Tirosh, Sheba Medical Center/Tel Aviv University, Israel (Overall Guidelines Committee; Chair of the Pancreas Subcommittee); Steven Waguespack, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Endocrine Subcommittee); Henry E. Wiley, National Eye Institute, United States (Ophthalmology Subcommittee). ",

year = "2023",

month = oct,

day = "1",

doi = "10.1002/cncr.34896",

language = "English (US)",

volume = "129",

pages = "2927--2940",

journal = "Cancer",

issn = "0008-543X",

publisher = "John Wiley and Sons Inc.",

number = "19",

}

TY - JOUR

T1 - Guidelines for surveillance of patients with von Hippel-Lindau disease

T2 - Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance

AU - Daniels, Anthony B.

AU - Tirosh, Amit

AU - Huntoon, Kristin

AU - Mehta, Gautam U.

AU - Spiess, Philippe E.

AU - Friedman, Debra L.

AU - Waguespack, Steven G.

AU - Kilkelly, Jill E.

AU - Rednam, Surya

AU - Pruthi, Sumit

AU - Jonasch, Eric A.

AU - Baum, Laura

AU - Chahoud, Jad

N1 - Funding Information: We thank all the adult patients with von Hippel-Lindau and the family members of pediatric patients who were included in the International VHL Surveillance Guidelines Consortium. We also thank the VHL Alliance for organizational support related to this project. This work was supported in part by the National Eye Institute (NIH/NEI K08EY027464 [ABD]). The members of the International VHL Surveillance Imaging Consortium include the following: Ashok Asthagiri, University of Virginia, United States (Central Nervous System Subcommittee); Sanjeev Bajaj, University of Alabama at Birmingham, United States (Radiology Subcommittee); Laura Van Metre Baum, Yale University School of Medicine, United States (Writing Committee); Ronald Boris, Indiana University Medical Center, United States (Kidney Subcommittee); John Butman, National Institutes of Health, United States (Endolymphatic Sac Subcommittee; Radiology Subcommittee); Jad Chahoud, Moffit Cancer Center, United States (Kidney Subcommittee; Writing Committee); Emmanuel Y. Chang, Baylor College of Medicine, United States (Ophthalmology Subcommittee); Emily Y. Chew, National Eye Institute, United States (Ophthalmology Subcommittee); Nick Cost, University of Colorado, United States (Pediatrics Subcommittee); Anthony B. Daniels, Vanderbilt University Medical Center, United States (Chair of the Overall Guidelines Committee; Chair of the Ophthalmology Subcommittee); Tobias Else, University of Michigan, United States (Endocrine Subcommittee); Debra L. Friedman, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Pediatrics Subcommittee); Paul Gidley, The University of Texas MD Anderson Cancer Center, United States (Endolymphatic Sac Subcommittee); Dan S. Gombos, The University of Texas MD Anderson Cancer Center, United States (Ophthalmology Subcommittee); Michael B. Gorin, UCLA Medical Center, United States (Ophthalmology Subcommittee); Thorvardur R. Halfdanarson, Mayo Clinic, United States (Pancreas Subcommittee); Pascal Hammel, Hôpital Beaujon, University of Paris, France (Pancreas Subcommittee); Mukesh Harasinghani, Harvard/Mass General Hospital, United States (Radiology Subcommittee); Kristin Huntoon, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Central Nervous System Subcommittee); Othon Iliopoulos, Harvard/Mass General Hospital, United States (Kidney Subcommittee); Eric Jonasch, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Kidney Subcommittee); Xavier Keutgen, University of Chicago Medical Center, United States (Pancreas Subcommittee); Jill E. Kilkelly, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Jeffrey Kim, Georgetown University, United States (Endolymphatic Sac Subcommittee); Rachel van Leeuwaarde, University Medical Center Utrecht, Netherlands (Pancreas Subcommittee); Jacques Lenders, Radboud University, Netherlands (Endocrine Subcommittee); Thera Links, University of Groningen, Netherlands (Pancreas Subcommittee; Endocrine Subcommittee); Russell Lonser, The Ohio State University, United States (Endolymphatic Sac Subcommittee; Central Nervous System Subcommittee); Rimas Lukas, Northwestern University Medical Center, United States (Central Nervous System Subcommittee); Ian McCutcheon, The University of Texas MD Anderson Cancer Center, United States (Central Nervous System Subcommittee); Gautam Mehta, The House Institute/National Institutes of Health, United States (Overall Guidelines Committee; Chair of the Endolymphatic Sac Subcommittee); Mia Miller, The House Institute, United States (Endolymphatic Sac Subcommittee); Karel Pacek, National Institutes of Health, United States (Endocrine Subcommittee); Dhaval Patel, National Cancer Institute, United States (Pancreas Subcommittee); Ivan Pedrosa, University of Texas, Southwestern MC, United States (Radiology Subcommittee); Sumit Pruthi, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Radiology Subcommittee); W. Kimryn Rathmell, Vanderbilt University Medical Center, United States (Kidney Subcommittee); Surya Rednam, Baylor College of Medicine, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Matt Shepard, Allegheny Health Network, United States (Central Nervous System Subcommittee); Carol L. Shields, Wills Eye Hospital, United States (Ophthalmology Subcommittee); Philippe Spiess, Moffit Cancer Center, United States (Overall Guidelines Committee; Chair of the Kidney Subcommittee); Amit Tirosh, Sheba Medical Center/Tel Aviv University, Israel (Overall Guidelines Committee; Chair of the Pancreas Subcommittee); Steven Waguespack, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Endocrine Subcommittee); Henry E. Wiley, National Eye Institute, United States (Ophthalmology Subcommittee). Funding Information: We thank all the adult patients with von Hippel‐Lindau and the family members of pediatric patients who were included in the International VHL Surveillance Guidelines Consortium. We also thank the VHL Alliance for organizational support related to this project. This work was supported in part by the National Eye Institute (NIH/NEI K08EY027464 [ABD]). The members of the International VHL Surveillance Imaging Consortium include the following: Ashok Asthagiri, University of Virginia, United States (Central Nervous System Subcommittee); Sanjeev Bajaj, University of Alabama at Birmingham, United States (Radiology Subcommittee); Laura Van Metre Baum, Yale University School of Medicine, United States (Writing Committee); Ronald Boris, Indiana University Medical Center, United States (Kidney Subcommittee); John Butman, National Institutes of Health, United States (Endolymphatic Sac Subcommittee; Radiology Subcommittee); Jad Chahoud, Moffit Cancer Center, United States (Kidney Subcommittee; Writing Committee); Emmanuel Y. Chang, Baylor College of Medicine, United States (Ophthalmology Subcommittee); Emily Y. Chew, National Eye Institute, United States (Ophthalmology Subcommittee); Nick Cost, University of Colorado, United States (Pediatrics Subcommittee); Anthony B. Daniels, Vanderbilt University Medical Center, United States (Chair of the Overall Guidelines Committee; Chair of the Ophthalmology Subcommittee); Tobias Else, University of Michigan, United States (Endocrine Subcommittee); Debra L. Friedman, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Pediatrics Subcommittee); Paul Gidley, The University of Texas MD Anderson Cancer Center, United States (Endolymphatic Sac Subcommittee); Dan S. Gombos, The University of Texas MD Anderson Cancer Center, United States (Ophthalmology Subcommittee); Michael B. Gorin, UCLA Medical Center, United States (Ophthalmology Subcommittee); Thorvardur R. Halfdanarson, Mayo Clinic, United States (Pancreas Subcommittee); Pascal Hammel, Hôpital Beaujon, University of Paris, France (Pancreas Subcommittee); Mukesh Harasinghani, Harvard/Mass General Hospital, United States (Radiology Subcommittee); Kristin Huntoon, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Central Nervous System Subcommittee); Othon Iliopoulos, Harvard/Mass General Hospital, United States (Kidney Subcommittee); Eric Jonasch, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Kidney Subcommittee); Xavier Keutgen, University of Chicago Medical Center, United States (Pancreas Subcommittee); Jill E. Kilkelly, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Jeffrey Kim, Georgetown University, United States (Endolymphatic Sac Subcommittee); Rachel van Leeuwaarde, University Medical Center Utrecht, Netherlands (Pancreas Subcommittee); Jacques Lenders, Radboud University, Netherlands (Endocrine Subcommittee); Thera Links, University of Groningen, Netherlands (Pancreas Subcommittee; Endocrine Subcommittee); Russell Lonser, The Ohio State University, United States (Endolymphatic Sac Subcommittee; Central Nervous System Subcommittee); Rimas Lukas, Northwestern University Medical Center, United States (Central Nervous System Subcommittee); Ian McCutcheon, The University of Texas MD Anderson Cancer Center, United States (Central Nervous System Subcommittee); Gautam Mehta, The House Institute/National Institutes of Health, United States (Overall Guidelines Committee; Chair of the Endolymphatic Sac Subcommittee); Mia Miller, The House Institute, United States (Endolymphatic Sac Subcommittee); Karel Pacek, National Institutes of Health, United States (Endocrine Subcommittee); Dhaval Patel, National Cancer Institute, United States (Pancreas Subcommittee); Ivan Pedrosa, University of Texas, Southwestern MC, United States (Radiology Subcommittee); Sumit Pruthi, Vanderbilt University Medical Center, United States (Overall Guidelines Committee; Chair of the Radiology Subcommittee); W. Kimryn Rathmell, Vanderbilt University Medical Center, United States (Kidney Subcommittee); Surya Rednam, Baylor College of Medicine, United States (Overall Guidelines Committee; Pediatrics Subcommittee); Matt Shepard, Allegheny Health Network, United States (Central Nervous System Subcommittee); Carol L. Shields, Wills Eye Hospital, United States (Ophthalmology Subcommittee); Philippe Spiess, Moffit Cancer Center, United States (Overall Guidelines Committee; Chair of the Kidney Subcommittee); Amit Tirosh, Sheba Medical Center/Tel Aviv University, Israel (Overall Guidelines Committee; Chair of the Pancreas Subcommittee); Steven Waguespack, The University of Texas MD Anderson Cancer Center, United States (Overall Guidelines Committee; Chair of the Endocrine Subcommittee); Henry E. Wiley, National Eye Institute, United States (Ophthalmology Subcommittee).

PY - 2023/10/1

Y1 - 2023/10/1

KW - VHL

KW - endolymphatic sac tumors

KW - hemangioblastomas

KW - kidney cancer

KW - pancreatic neuroendocrine tumors

KW - pheochromocytoma

KW - renal cell cancer

KW - von Hipple-Lindau syndrome

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UR - http://www.scopus.com/inward/citedby.url?scp=85162962750&partnerID=8YFLogxK

U2 - 10.1002/cncr.34896

DO - 10.1002/cncr.34896

M3 - Article

C2 - 37337409

AN - SCOPUS:85162962750

SN - 0008-543X

VL - 129

SP - 2927

EP - 2940

JO - Cancer

JF - Cancer

IS - 19

ER -

Guidelines for surveillance of patients with von Hippel-Lindau disease: Consensus statement of the International VHL Surveillance Guidelines Consortium and VHL Alliance

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