Childhood Onset Survey 2022 Report - Flipbook - Page 12
How are we Informing Research?
We work closely with Boston Children’s Hospital’s two studies; Registry
and Natural History Study of Early Onset Hereditary Spastic Paraplegia
(Natural History Study) and Hereditary Spastic Paraplegia Genomic
Sequencing Initiative (HSPseq) to help families connect with the research.
The Natural History Study is critical to building the database of those
affected as the foundation for future clinical trials. Research has long
development cycles and with the hard work of those at Boston Children’s
and many dedicated researchers (all of whom have access to the data in
the Study), we are tackling this crucial first step.
At the time of completing their surveys, 73% of respondents had not
enrolled their child in the Natural History Study. 108 individuals were sent
letters personally introducing each of them
with Research Coordinator, Catherine Jordan
(catherine.jordan@childrens.harvard.edu ). This resulted in approximately
70 people initiating enrollment in the Study
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