Mortality in neurofibromatosis 1: in North West England: an assessment of actuarial survival in a region of the UK since 1989

Sorensen SA, Mulvihill JJ, Nielsen A : Long term follow up of von Recklinghausen neurofibromatosis: survival and malignant neoplasms. N Engl J Med 1986; 314: 1010–1015.

Zöller M, Rembeck B, Akesson HO, Angervall L : Life expectancy, mortality and prognostic factors in neurofibromatosis type 1. A twelve-year follow-up of an epidemiological study in Göteborg, Sweden. Acta Derm Venereol 1995; 75: 136–140.

Rasmussen SA, Yang Q, Friedman JM : Mortality in neurofibromatosis 1: an analysis using US death certificates. Am J Hum Genet 2001; 68: 1110–1118.

Evans DGR, Baser ME, McGaughran J, Sharif S, Donnelly B, Moran A : Malignant peripheral nerve sheath tumours in neurofibromatosis 1. J Med Genet 2002; 39: 311–314.

McGaughran JM, Harris DI, Donnai D et al: A clinical study of type 1 neurofibromatosis in North West England. J Med Genet 1999; 36: 192–196.

Mulvihill JJ, Parry DM, Sherman JL, Pikus A, Kaiser-Kupfer MI, Eldridge R : NIH conference. Neurofibromatosis 1 (Recklinghausen disease) and neurofibromatosis 2 (bilateral acoustic neurofibromatosis). An update. Ann Intern Med 1990; 113: 39–52.

Office of National Statistics: Death rates 2008. http://www.statistics.gov.uk/downloads/theme_health/DR2008/DR_08.pdf .

Samuelsson B, Samuelsson S : Neurofibromatosis in Gothenburg, Sweden. I. Background, study design and epidemiology. Neurofibromatosis 1989; 2: 6–22.

Sharif S, Moran A, Huson SM et al: Women with neurofibromatosis 1 (NF1) are at a moderately increased risk of developing breast cancer and should be considered for early screening. J Med Genet 2007; 44: 481–484.

Huson SM, Compston DA, Clark P, Harper PS : A genetic study of von Recklinghausen neurofibromatosis in south east Wales. I. Prevalence, fitness, mutation rate, and effect of parental transmission on severity. J Med Genet 1989; 26: 704–711.

Lammert M, Friedman JM, Kluwe L, Mautner VF : Prevalence of neurofibromatosis 1 in German children at elementary school enrolment. Arch Dermatol 2005; 141: 71–74.

Evans DG, Howard E, Giblin C et al: Birth incidence and prevalence of tumour prone syndromes: estimates from a UK genetic family register service. Am J Med Genet 2010; 152A: 327–332.

Imaizumi Y : Mortality of neurofibromatosis in Japan, 1968–1992. J Dermatol 1995; 22: 191–195.

Walker L, Thompson D, Easton D et al: A prospective study of neurofibromatosis type 1 cancer incidence in the UK. Br J Cancer 2006; 95: 233–238.

Evans DGR, Birch JM, Ramsden RT, Moffat D, Baser ME : Malignant transformation and new primary tumours after therapeutic radiation for benign disease: substantial risks in certain tumour-prone syndromes. J Med Genet 2006; 43: 289–294.

Sharif S, Ferner R, Birch J, Gattamaneni R, Gillespie J, Evans DGR : Second primary tumours in neurofibromatosis 1 (NF1) patients treated for optic glioma: substantial risks post radiotherapy. J Clin Oncol 2006; 24: 2570–2575.

Singhal S, Kerr B, Birch J, Lashford L, Evans DGR : Clinical characteristics of symptomatic sporadic and NF1 related optic gliomata: implications for management. Archives Dis Child 2002; 87: 65–70.

King A, Listernick R, Charrow J, Piersall L, Gutmann DH : Optic pathway gliomas in neurofibromatosis type 1: the effect of presenting symptoms on outcome. Am J Med Genet A 2003; 122A: 95–99.

Hartley AL, Birch JM, Kelsey AM, Harris M, Jones PH : Sarcomas in three generations of a family with neurofibromatosis. Cancer Genet Cytogenet 1990; 45: 245–248.