Health Records Vital to Data Research, But Often
Hard to Obtain
O’Boyle and many other parent volunteers involved in the
Phelan-McDermid Syndrome Foundation spend more than 40
hours a week on foundation-related tasks. Because their kids’
condition is so rare, research into treatments might never happen without their advocacy and work.
O’Boyle reached out to Parent Project Muscular Dystrophy to
help model the Phelan-McDermid Syndrome International
Registry after theirs. She also talked to genetic researchers to find
out what kind of data they look for when pursuing treatments. Not
having any formal data analytics training prior to serving as the
data registry’s principal investigator, O’Boyle set out to learn on
the job. “I did not receive any formal training for my current posi-
tion. From 2010 to present I have attended meetings and work-
shops on related topics, reached out to experts in the field, and
called upon other disease groups for guidance,” she says.
In order to improve the quality of the answers the families
would provide in the registry questionnaires, the Phelan-McDermid Syndrome Foundation held training for families on
how to collect and organize their medical records. The premise being that if you have the medical record in front of you
when you are filling out the questionnaire, then your answers
will be more accurate and thus the data in the registry will be
O’Boyle knows firsthand what families are up against when
trying to collect enough of their children’s records just to coordinate and continue ongoing care.
In 2014, Megan O’Boyle participated in a discussion at a meeting of the National
Institute for Neurological Disorders and Stroke Non-Profit Forum.
Megan O’Boyle presents data from the Phelan-McDermid Syndrome registry in May
2015 at the International Meeting for Autism Research.
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