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A design thinking approach to primary ovarian insufficiency.
Panminerva medica
  • Lisa A Martin, ConoverSystems, Ashburn, VA
  • Alison G Porter, ConoverSystems, Ashburn, VA
  • Vincent A Pelligrini, Reading Health System, Reading, PA
  • Peter F Schnatz, Reading Health System, Reading, PA
  • Xuezhi Jiang, Reading Health System, Reading, PA
  • Nicole Kleinstreuer, National Institute of Environmental Health Sciences, National Institutes of Health, Durham, NC
  • Janet E Hall, National Institute of Environmental Health Sciences, National Institutes of Health, Durham, NC
  • Sarah Verbiest, University of North Carolina School of Social Work, Chapel Hill, NC
  • Jill Olmstead, PricewaterhouseCoopers Public Services, McLean, VA
  • Ryan Fair, Oracle, Redwood City, CA
  • Alberto Falorni, University of Perugia, Perugia, Italy
  • Luca Persani, University of Milan and IRCCS Istituto Auxologico Italiano, Milan, Italy
  • Aleksandar Rajkovic, University of Pittsburgh, Pittsburgh, PA
  • Khanjan Mehta, Pennsylvania State University, University Park, PA
  • Lawrence M Nelson, Division of Intramural Research, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD
  • Rachel's Well Primary Ovarian Insufficiency Community of Practice Group, Rachel's Well Primary Ovarian Insufficiency Community of Practice Group
Document Type
Article
Publication Date
3-1-2017
Abstract

Most clinicians are not prepared to provide integrated personal care to address all the clinical needs of women with primary ovarian insufficiency. Design thinking is an engineering methodology used to develop and evaluate novel concepts for systems operation. Here we articulate the need for a seamlessly integrated mobile health system to support genomic research as well as patient care. We also review the pathophysiology and management of primary ovarian insufficiency. Molecular understanding regarding the pathogenesis is essential to developing strategies for prevention, earlier diagnosis, and appropriate management of the disorder. The syndrome is a chronic disorder characterized by oligo/amenorrhea and hypergonadotropic hypogonadism before age 40 years. There may be significant morbidity due to: 1) depression and anxiety related to the loss of reproductive hormones and infertility; 2) associated autoimmune adrenal insufficiency or hypothyroidism; and 3) reduced bone mineral density and increased risk of cardiovascular disease related to estrogen deficiency. Approximately 5% to 10% of women with primary ovarian insufficiency conceive and have a child. Women who develop primary ovarian insufficiency related to a premutation in FMR1 are at risk of having a child with fragile X syndrome, the most common cause of inherited intellectual disability. In most cases of spontaneous primary ovarian insufficiency no environmental exposure or genetic mechanism can be identified. As a rare disease, the diagnosis of primary ovarian insufficiency presents special challenges. Connecting patients and community health providers in real time with investigators who have the requisite knowledge and expertise would help solve this dilemma.

Citation Information
Lisa A Martin, Alison G Porter, Vincent A Pelligrini, Peter F Schnatz, et al.. "A design thinking approach to primary ovarian insufficiency." Panminerva medica Vol. 59 Iss. 1 (2017) p. 15 - 32
Available at: http://works.bepress.com/xuezhi-jiang/3/