U-M to develop guide for parents of children with disorders of sex development

Wed Jan 16, 2013 3:52pm EST

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University of Michigan  researchers awarded funding to develop decision-making
aid for parents that outlines all viable treatment options  

ANN ARBOR, Mich.,  Jan. 16, 2013  /PRNewswire-USNewswire/ -- When a child is
born with a disorder of sex development, decisions regarding gender assignment
and genital surgery are often made quickly and under pressure.

Quite often those decisions are surgical and often irreversible. Former patients
and health care advocates have long complained that parents are provided
inadequate information to make decisions for their child with a disorder of sex
development.

But with a new award from the Patient-Centered Outcomes Research Institute
(PCORI), researchers at the  University of Michigan  hope to provide parents
with the tools needed to make decisions about disorders of sex development
(DSD).

"When a child with a disorder of sex development is born, parents are often
experiencing enormous distress," says  David E. Sandberg, Ph.D., director of the
Division of Child Behavioral Health at C.S. Mott Children's Hospital and
professor of pediatrics and communicable diseases at the  University of Michigan
 Medical School.  

"The right decisions about gender assignment -- is it a boy or a girl -- and the
best course of action (for example should there be surgery? what kind? when?)
are not obvious."

"Parents can make decisions that they think are in the best interest of the
child that they will regret later."

DSD is a term that describes a wide range of diagnoses that affect the
development of sex organs, whether due to chromosomes, hormones, or other
factors. 

Sandberg said despite significant progress, genetic diagnosis does not
necessarily offer clear guidance for parents about gender assignment or best
treatment. "It can open the door to additional uncertainties," he says.

Sandberg's project, which has a proposed budget of about  $1.3 million, would
create a decision-making aid that could be used in genetic counseling and
test-result disclosure that would prepare parents to be fully involved in
management or treatment plans for their children.

"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.   

The awards were part of PCORI's first cycle of primary research funding and
selected from among nearly 500 completed applications submitted earlier this
year. All proposals were approved pending a business and programmatic review by
PCORI staff and completion of a formal award contract.

About C.S. Mott Children's Hospital's services for Disorders of Sex Development:
 The providers on our DSD team work together to provide timely, expert care with
a focus on being truly patient- and family-centered. Our team is made up of
pediatric specialists from endocrinology, genetics, urology, gynecology, general
surgery, psychology, pathology, plastic surgery, child life and social work.. 
Together, we provide age-appropriate care, support, education and resources to
both patients and families.

More information is available at:  
http://www.mottchildren.org/medical-services/peds-sex-development

About PCORI  
The Patient-Centered Outcomes Research Institute (PCORI) is an independent,
non-profit organization authorized by Congress in 2010. Its mission is to fund
research that will provide patients, their caregivers and clinicians with the
evidence-based information needed to make better-informed health care decisions.
PCORI is committed to continuously seeking input from a broad range of
stakeholders to guide its work. More information is available at  www.pcori.org.

SOURCE   University of Michigan  C.S. Mott Children's Hospital


Mary F. Masson, +1-734-764-2220, mfmasson@umich.edu

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