I’m the Mom of a kid with special needs. Parker was born with an extra chromosome. It’s known in layman’s terms as Down syndrome.
But Reed and I refer to that extra chromosome as ‘no big deal.’
Honestly and truthfully.
Especially compared to Parker’s diagnosis of Pulmonary Hypertension.
Parker can live a long and joyful life with that extra chromosome. But the PH could cut that life short.
Very short.
Because I understand this, I do a lot of research on PH. I stay up to date on the new drugs coming out. I read all I can about the known contributors to this disease. And I keep abreast of clinical studies in the area of PH.
And I’m not the only parent with a PhD from the University of Google. There are thousands and thousands of us. All of us researching the best treatment plans to help keep our kids alive.
Today I’d like to introduce you to a new site whose goal it is to help Moms like me. And parents like you too.
NIH has launched a new website for parents: Children and Clinical Studies. The focus of this site is medical research studies for children.
Studies with children participants are critical to helping us understand the differences in diagnosis, prevention, and treatment between children and adults. But it’s perfectly natural for parents to be concerned about the risks and benefits of enrolling their child in a medical research study. The new Web site will help parents and others learn more about how studies are conducted, why they are important, and what measures are taken to protect participants’ safety and privacy.
The Web site combines practical information with video footage of children, parents, and health care providers discussing the rewards and challenges of participating in research. Plus, parents can print out a list of questions to ask the research team when deciding whether to enroll their child in a study.
The choice to enroll a child in a clinical study is a personal one. And now you have a resource to help make that decision.
You can also find Tammy and Parker hanging out at their other blog Praying For Parker, where they just received some good news via Parker’s echo yesterday.