Page 61 - Lauren Lolo Spencer Issue

to remember, but we published the first-ever medical care guidelines for adults with Down syndrome. If you remember, in the 1980s, the average lifespan was 28, and that’s probably why our research was housed almost exclusively at the National Institute of Child Health and Human Development. Also, as you know, people with intellectual disabilities tend to fall off the map after high school anyway, socially, every which way, and medically as well. And our children’s hospi- tals are infinitely more accessible than our adult ones.
need to break that cycle. If we want resources that require multiple years, let’s do multiple years together. Let’s invest and have impact together. Eventually, I would like to see some sort of endowment for that so that it is truly sustainable—because it’s hard. If we promise these for generations to come, how many six year intervals do any of us have? It has to transcend us as individuals, and I suppose endowment is the best way to do that.
But this has been game-changing. People are taking it to their medical appointments. We have a family- friendly version–because it is quite complicated–that people love. And of course, all of it is downloadable free on our website. We just did a Spanish and Japanese version. By the end of the year, we’ll have six more dif- ferent languages that can be downloaded.
We’re really proud of all that. The other thing that hap- pens is that we’ve got a grant to do a deep dive on eye and vision issues in people with Down syndrome. One of the wonderful, intended consequences of having 2,200 patients at the Sie Center for Down Syndrome at Children’s Hospital Colorado is that the ophthalmology department now has over 500 kids with Down syn- drome! There, the irrepressible and brilliant Dr. Emily McCourt discovered that keratoconus, which can lead to complete loss of vision, is something that is way up in kids and adults with Down syndrome. And her find- ings have helped rewrite the eye care section of the American Academy of Pediatrics guidelines for chil- dren and adolescents with Down syndrome. With the cross-linking, we can stop keratoconus in its tracks. We can’t reverse it, but we can stop it.
GLOBAL had underwritten the cross-linking machine, a Pentacam®, all this great equipment for the eye so that the medical professionals at the Sie Center and
With the authors being made up of the medical care directors of every major adult center for Down syn- drome in the U.S., we were able to use GRADE and PICOT framework, which is very complicated and arduous. It was very difficult because we’re trying to create best practices. What it revealed was what we already knew, that there’s no research for the best prac- tices. And we were relying a lot on the 20-plus experi- ence of each of the authors to inform the guideline. We went through 11,000-plus publications as part of the review process, looking at our inclusion and exclusion criteria for nine medical areas. Usually, a guideline is about a single disease like Alzheimer’s or diabetes. We’re trying to do a whole human. It seems impossible. How do you do a whole human?
Our senior director of research and medical care, Bryn Gelaro LSW, is leading this impactful initiative. We picked nine medical areas, and we did inclusion/exclu- sion criteria on research studies for all the major med- ical directors of the centers together. We came up with a really strong guideline, so strong that it was published in JAMA. We are now confident that any medical pro- fessional can now find these guidelines and because they are published in JAMA we believe nearly every- one will also feel confident and comfortable following them even if they have only one patient with Down syndrome.
Cooper: It’s peer-reviewed.
Whitten: Exactly. This is a problem. We did ask a lot of people to write the guidelines. We were like, “We’ll give you money,” but nobody wanted to do it because it was so difficult. So now we’re on this treadmill, Chet, and we can’t get off. We don’t want to wait another 20 years before the next one. Things are changing so quickly because of our great work in research and med- ical care. We also cannot not add new topic areas such as solid tumor cancers, leukemia, sleep apnea, eye vision and physical therapy unless we continue to invest and work hard. We have to add new areas! And then we have to go back and update the nine areas we already completed and so on.
What we’ve promised the community is if they could invest in us over a five-year period we will update the adult guideline every sixth year. Usually, a small com- munity like ours plans and fund-raises year-to-year. We
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