A 20-year perspective on the International Fanconi Anemia Registry (IFAR)

Blood. 2003 Feb 15;101(4):1249-56. doi: 10.1182/blood-2002-07-2170. Epub 2002 Sep 26.

Abstract

Fanconi anemia (FA) is an autosomal recessive disorder characterized by cellular hypersensitivity to DNA cross-linking agents and cancer predisposition. Recent evidence for the interactions of ataxia-telangiectasia mutated protein ATM and breast cancer susceptibility proteins BRCA1 and BRCA2 (identified as FANCD1) with other known FA proteins suggests that FA proteins have a significant role in DNA repair/recombination and cell cycle control. The International Fanconi Anemia Registry (IFAR), a prospectively collected database of FA patients, allows us the unique opportunity to analyze the natural history of this rare, clinically heterogeneous disorder in a large number of patients. Of the 754 subjects in this study, 601 (80%) experienced the onset of bone marrow failure (BMF), and 173 (23%) had a total of 199 neoplasms. Of these neoplasms, 120 (60%) were hematologic and 79 (40%) were nonhematologic. The risk of developing BMF and hematologic and nonhematologic neoplasms increased with advancing age with a 90%, 33%, and 28% cumulative incidence, respectively, by 40 years of age. Univariate analysis revealed a significantly earlier onset of BMF and poorer survival for complementation group C compared with groups A and G; however, there was no significant difference in the time to hematologic or nonhematologic neoplasm development between these groups. Multivariate analysis of overall survival time shows that FANCC mutations (P =.007) and hematopoietic stem cell transplantation (P = <.0001) define a poor-risk subgroup. The results of this study of patients registered in the IFAR over a 20-year period provide information that will enable better prediction of outcome and aid clinicians with decisions regarding major therapeutic modalities.

Publication types

  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Bone Marrow Diseases / complications
  • Fanconi Anemia* / complications
  • Fanconi Anemia* / genetics
  • Fanconi Anemia* / mortality
  • Fanconi Anemia* / therapy
  • Female
  • Genotype
  • Hematologic Neoplasms / complications
  • Hematologic Neoplasms / epidemiology
  • Humans
  • International Cooperation
  • Male
  • Mutation
  • Neoplasms / complications
  • Neoplasms / epidemiology
  • Phenotype
  • Prognosis
  • Registries*
  • Sex Characteristics
  • Stem Cell Transplantation
  • Survival Rate
  • Time Factors