Hereditary 1,25-dihydroxyvitamin D-resistant rickets (HVDRR): clinical heterogeneity and long-term efficacious management of eight patients from four unrelated Arab families with a loss of function VDR mutation

J Pediatr Endocrinol Metab. 2018 Aug 28;31(8):861-868. doi: 10.1515/jpem-2017-0312.

Abstract

Background: Vitamin D regulates the concentrations of calcium and phosphate in blood and promotes the growth and remodeling of bones. The circulating active form of vitamin D, 1,25-dihydroxyvitamin D, binds to the vitamin D receptor (VDR), which heterodimerizes with the retinoid X receptor to regulate the expression of target genes. Inactivating mutations in the VDR gene cause hereditary vitamin D-resistant rickets (HVDRR), a rare disorder characterized by an early onset of rickets, growth retardation, skeletal deformities, hypocalcemia, hypophosphatemia and secondary hyperparathyroidism, and in some cases alopecia.

Methods: We describe eight new HVDRR patients from four unrelated consanguineous families. The VDR gene was sequenced to identify mutations. The management of patients over a period of up to 11 years following the initial diagnosis is assessed.

Results: Although all patients exhibit main features of HVDRR and carry the same c.885C>A (p.Y295*) loss of function mutation in the VDR gene, there was heterogeneity of the manifestations of HVDRR-associated phenotypes and developmental milestones. These eight patients were successfully treated over a period of 11 years. All clinical symptoms were improved except alopecia.

Conclusions: The study concludes that VDR sequencing and laboratory tests are essential to confirm HVDRR and to assess the effectiveness of the treatment.

Keywords: alopecia; growth retardation; hereditary 1,25-dihydroxyvitamin D-resistant rickets; treatment; vitamin D receptor mutation.

MeSH terms

  • Arabs / genetics*
  • Bone Density Conservation Agents / therapeutic use*
  • Calcitriol / therapeutic use*
  • Child
  • Child, Preschool
  • Disease Management
  • Drug Resistance*
  • Familial Hypophosphatemic Rickets / drug therapy
  • Familial Hypophosphatemic Rickets / genetics*
  • Familial Hypophosphatemic Rickets / pathology
  • Female
  • Follow-Up Studies
  • Humans
  • Infant
  • Male
  • Mutation*
  • Pedigree
  • Prognosis
  • Receptors, Calcitriol / genetics*

Substances

  • Bone Density Conservation Agents
  • Receptors, Calcitriol
  • VDR protein, human
  • Calcitriol