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In this
5-year ground-breaking study, we will identify and track
children diagnosed with progressive neurological, metabolic,
or chromosomal conditions and their families to determine and
document clinical progression of the child’s condition and the
associated bio-psychosocial-spiritual experiences of the
family. Our goal is to close the key knowledge gaps and to
provide new information about the best care for these
vulnerable children and their families.
Our sample
includes children and their families that will be recruited
on an ongoing basis. Both newly diagnosed children and those
with established conditions of any duration will be eligible
in order to study the range of symptoms and stresses. We
anticipate recruitment of approximately 300 families through
collaboration with genetic, metabolic, and neurology clinics
in six Canadian cities. Enrollment is expected to open in
March 2009. Participants must be residents of Canada.
This
study will provide some of the first-ever detailed
descriptions of the clinical symptom trajectory of these
non-treatable progressive conditions and the
bio-psychosocial-spiritual aspects for families, from
diagnosis through bereavement. We will close gaps in
knowledge and provide innovative information about the best
care for these vulnerable children and their families.
Specifically, the study will provide information to families
about what they might expect as the child’s illness
progresses; assist with the development of symptom
interventional research in symptom management, as well as
bio-psychosocial-spiritual care of families; and lay the
groundwork for future studies.
For the study brochure, please click
here.
TO ENROLL A FAMILY
IN THIS STUDY, PLEASE CONTACT OUR TOLL-FREE NUMBER AT
1-877-945-2775
OR EMAIL AT: study@chartingterritory.com
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