For Educational Purposes Only

Understanding ADPKD helps support life-long management

Autosomal dominant polycystic kidney disease (ADPKD) is a rare disease that can lead to severe impairment of kidney function and kidney failure.1-3 There were approximately 140,000 diagnosed cases of ADPKD in the United States in 2017.4 It has been estimated that the annual costs associated with end-stage renal disease due to ADPKD are $1.8 billion.5 Identification of patients at risk for rapid progression may provide an opportunity for intervention.6-8

Frameworks in Health and Quality: Collaborating for Improved ADPKD Management is a series of educational resources for healthcare stakeholders — including providers and payers who can choose to share resources with patients and their caregivers — that aims to:

  • Emphasize the importance of understanding ADPKD and its impact
  • Enhance communication among all stakeholders
  • Support the healthcare team with patient and caregiver educational materials
  • Promote ADPKD topics such as management, risk factors for rapid progression, patient engagement, and shared decision making

Evidence demonstrates that earlier detection and management of ADPKD may provide an opportunity for intervention to treat early-onset complications.9,10 Our Frameworks in Health and Quality: Collaborating for Improved ADPKD Management program can complement your efforts by providing resources to key stakeholders who are in a position to help improve the care delivered to patients.

  1. US Food and Drug Administration. Developing products for rare diseases and conditions. Accessed October 9, 2018.
  2. Takiar V, Caplan MJ. Polycystic kidney disease: pathogenesis and potential therapies. Biochim Biophys Acta Mol Basis Dis. 2011;1812(10):1337-1343.
  3. Hateboer N, v Dijk MA, Bogdanova N, et al. Comparison of phenotypes of polycystic kidney disease types 1 and 2. European PKD1-PKD2 Study Group. Lancet. 1999;353:103-107.
  4. Data on file. Otsuka America Pharmaceutical, Inc; Rockville, MD. #TOLV 004.
  5. Kelleher CL, McFann KK, Johnson AM, Schrier RW. Characteristics of hypertension in young adults with autosomal dominant polycystic kidney disease compared with the general US population. Am J Hypertens. 2004;17 (11 Pt 1):1029-1034.
  6. Grantham JJ, Mulamalla S, Swenson-Fields KI. Why kidneys fail in autosomal dominant polycystic kidney disease. Nat Rev Nephrol. 2011;7:556-566.
  7. Grantham JJ, Torres VE, Chapman AB, et al. Volume progression in polycystic kidney disease. N Engl J Med. 2006;354:2122-2130.
  8. Schrier RW, Brosnahan G, Cadnapaphornchai MA, et al. Predictors of autosomal dominant polycystic kidney disease progression. J Am Soc Nephrol. 2014;25(11):2399-2418.
  9. Masoumi A, Reed-Gitomer B, Kelleher C, Bekheirnia MR, Schrier RW. Developments in the management of autosomal dominant polycystic kidney disease. Ther Clin Risk Manag. 2008;4(2):393-407.
  10. Ness B, Stovall K. Current recommendations for treating autosomal dominant polycystic kidney disease. JAAPA. 2016;29(12):24-28.

Frameworks resources are intended for educational purposes only and are intended for healthcare professionals and/or payer representatives who may choose to share some of these resources with patients or their caregivers. Healthcare professionals should use independent medical judgment when considering Frameworks educational resources. Patients and caregivers should discuss Frameworks materials with a healthcare professional. They are not intended as, nor are they a replacement for, medical advice and treatment from a healthcare professional. Frameworks resources are not intended as reimbursement or legal advice. Users should seek independent, qualified professional advice to ensure their organization is in compliance with the complex legal and regulatory requirements governing healthcare services, and that treatment decisions are made consistent with the applicable standards of care. Frameworks is sponsored by Otsuka Pharmaceutical Development & Commercialization, Inc.