A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency

A. Falorni, V. Minarelli, C. M. Eads, C. M. Joachim, L. Persani, R. Rossetti, P. Yurttas Beim, V. A. Pellegrini, P. F. Schnatz, S. Rafique, K. Kissell, K. A. Calis, V. Popat, L. M. Nelson

Research output: Contribution to journalArticle

Abstract

Large-scale medical sequencing provides a focal point around which to reorganize health care and health care research. Mobile health (mHealth) is also currently undergoing explosive growth and could be another innovation that will change the face of future health care. We are employing primary ovarian insufficiency (POI) as a model rare condition to explore the intersection of these potentials. As both sequencing capabilities and our ability to intepret this information improve, sequencing for medical purposes will play an increasing role in health care beyond basic research: it will help guide the delivery of care to patients. POI is a serious chronic disorder and syndrome characterized by hypergonadotrophic hypogonadism before the age of 40 years and most commonly presents with amenorrhea. It may have adverse health effects that become fully evident years after the initial diagnosis. The condition is most commonly viewed as one of infertility, however, it may also be associated with adverse long-term outcomes related to inadequate bone mineral density, increased risk of cardiovascular disease, adrenal insufficiency, hypothyroidism and, if pregnancy ensues, having a child with Fragile X Syndrome. There may also be adverse outcomes related to increased rates of anxiety and depression. POI is also a rare disease, and accordingly, presents special challenges. Too often advances in research are not effectively integrated into community care at the point of service for those with rare diseases. There is a need to connect community health providers in real time with investigators who have the requisite knowledge and expertise to help manage the rare disease and to conduct ongoing research. Here we review the pathophysiology and management of POI and propose the development of an international Clinical Research Integration Special Program (CRISP) for the condition.

Original languageEnglish
Pages (from-to)245-261
Number of pages17
JournalPanminerva Medica
Volume56
Issue number4
Publication statusPublished - Dec 1 2014

Fingerprint

Primary Ovarian Insufficiency
Rare Diseases
Delivery of Health Care
Research
Point-of-Care Systems
Fragile X Syndrome
Adrenal Insufficiency
Aptitude
Hypogonadism
Telemedicine
Health Services Research
Amenorrhea
Health
Hypothyroidism
Bone Density
Infertility
Patient Care
Cardiovascular Diseases
Anxiety
Research Personnel

Keywords

  • Autoimmune oophoritis
  • Communitybased participatory research
  • Menopause
  • Mobile health units
  • Premature
  • Primary ovarian insufficiency
  • Rare diseases

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Falorni, A., Minarelli, V., Eads, C. M., Joachim, C. M., Persani, L., Rossetti, R., ... Nelson, L. M. (2014). A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency. Panminerva Medica, 56(4), 245-261.

A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency. / Falorni, A.; Minarelli, V.; Eads, C. M.; Joachim, C. M.; Persani, L.; Rossetti, R.; Beim, P. Yurttas; Pellegrini, V. A.; Schnatz, P. F.; Rafique, S.; Kissell, K.; Calis, K. A.; Popat, V.; Nelson, L. M.

In: Panminerva Medica, Vol. 56, No. 4, 01.12.2014, p. 245-261.

Research output: Contribution to journalArticle

Falorni, A, Minarelli, V, Eads, CM, Joachim, CM, Persani, L, Rossetti, R, Beim, PY, Pellegrini, VA, Schnatz, PF, Rafique, S, Kissell, K, Calis, KA, Popat, V & Nelson, LM 2014, 'A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency', Panminerva Medica, vol. 56, no. 4, pp. 245-261.
Falorni A, Minarelli V, Eads CM, Joachim CM, Persani L, Rossetti R et al. A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency. Panminerva Medica. 2014 Dec 1;56(4):245-261.
Falorni, A. ; Minarelli, V. ; Eads, C. M. ; Joachim, C. M. ; Persani, L. ; Rossetti, R. ; Beim, P. Yurttas ; Pellegrini, V. A. ; Schnatz, P. F. ; Rafique, S. ; Kissell, K. ; Calis, K. A. ; Popat, V. ; Nelson, L. M. / A clinical research integration special program (CRISP) for young women with primary ovarian insufficiency. In: Panminerva Medica. 2014 ; Vol. 56, No. 4. pp. 245-261.
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