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U-M to develop guide for parents of children with disorders of sex development
Date:1/16/2013

"We want to support parents becoming actively involved in making those decisions, and reduce the likelihood of future worry and regret about decisions that have been made," he says, adding that the guide will educate families about sex development of the body, how disorders are diagnosed (especially how to interpret genetic test results), and possible relationships between diagnostic/genetic testing, decisions about care, and known consequences of those decisions on their child and entire family.

Sandberg plans to introduce the decision-making guide into care for persons affected by DSD and evaluate its effectiveness through an existing network of medical centers supported by the National Institute of Child Health and Human Development. The DSD Translational Research Network is comprised of health care providers and researchers at the University of Michigan/C.S. Mott Children's Hospital, UCLA, UCSF, Seattle Children's Hospital and other medical centers.

PCORI funded the project as part of an effort to help patients make better-informed health decisions.

"Today marks a major milestone in our work as we build a portfolio of comparative clinical effectiveness research that will provide patients and those who care for them better information about the health care decisions they face," said PCORI Executive Director Joe Selby, MD, MPH. "These research projects reflect PCORI's patient-centered research agenda, emphasizing the inclusion of patients and caregivers at all stages of the research."

PCORI is committing $40.7 million in funding for a slate of 25 projects, which were approved by PCORI's Board of Governors following a competitive, multi-stage review process involving scientists, patients, caregivers and other stakeholders. Proposals were evaluated on the basis of scientific merit, engagement of patients and stakeholders, methodological rigor and fit within PCORI's National Priorities for Research and Research Agenda.
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Contact: Mary F. Masson
mfmasson@umich.edu
734-764-2220
University of Michigan Health System
Source:Eurekalert

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