The Road We've Shared

By Stephanie Holland

Down syndrome research is one those topics that divides our community.  Some feel strongly that research can provide answers to medical questions and new drug therapies are necessary to improve cognition.  Others point to the less than ethical tests that have been forced on people with intellectual disabilities in the past and feel just as strongly that research is too dangerous and unnecessary.  

In a recent webinar put on by LuMind, Dr. Michael Harpold described what he sees as the reason the type of research they focus on, cognitive enhancement, is so important:

During the discussion he also pointed out that biomedical research can lead not only to new and safe drug therapies, but also “new and more effective interventional strategies in education, employment, and independence.”  He claims that once they understand better how the specific areas of the brain work, that information can be used to adapt classrooms and create other non-pharmaceutical interventions.  One of the important examples of this is the new Arizona Cognitive Test Battery (ACTB) for individuals with Down syndrome.

Developed in 2010, the purpose of these tests was to replace regular IQ tests. They are described as “the first cognitive test battery specifically designed for use in individuals with Down syndrome across a range of ages and ability levels.” Doctors realized that they needed a better way to evaluate cognition in people with intellectual disabilities if they were going to prove that new drugs actually worked.  The ACTB can also be used now to get a better sense of decline in functioning associated with Alzheimer’s dementia, and a host of other things that the old IQ tests used to do ineffectively.

We’ve written quite a bit about the topic of research on The Road:

• Research and Adults who have Down syndrome – Stephanie Holland – 3/6/14
• Cognitive Enhancement: Perceptions Among Parents of Children with Disabilities– Stephanie Holland – 3/17/14
• Depression in Adults who have Down syndrome – Stephanie Holland – 4/14/14
• A Toe in The Water – A Down Syndrome Research Convert – Stephanie Holland – 8/5/14
• Research and the man voice pill – Mardra Sikora – 9/8/14
• Silly Research Studies – Stephanie Holland – 9/13/14

We also talked to some of the doctors involved with creating the Down syndrome registry: NIH Talks about Ds Connect – The Down syndrome Registry


Did you know that there’s a section of the registry specifically about adulthood?  The questions are designed to collect information about things like what kind of medical and dental care adults receive and what kinds of health issues they are experiencing.  The adult module is currently being revised soon there will be two new sets of questions specifically about male and female health issues for adults.

We understand that the decision to join the registry or not is one that each individual family should make on their own, we want to help get information out to our community so that each family can make an informed decision on their own.  Now that we have a relationship with a few great women at NIH, we’d be happy to pass along any questions or concerns you may have.

We recently found out that the National Institute on Aging has announced a research grant for a study to look at the long term effects of Alzheimer’s in adults with Down syndrome.  This will be important for us to understand the course of the disease and how it manifests in our loved ones.  

But research is not all about biology.  My focus, as a trained qualitative researcher has been on other things, like disability in Disney films, Down syndrome in children’s literature, and how parents of adults in my son’s generation define advocacy.  Right now, I’m working on a project to review all the books for children and young adults that feature a character who has Down syndrome and are available on Kindle through Amazon.  (Stay tuned for updates on that project in the coming months.) 

There are lots of research projects out there that look at things like quality of life for aging people with Ds, disability and poverty, and parenting.  We also need to press for an updated study on life expectancy of people with Ds in different racial groups.  

The data in the previous study is not only scary, it’s unacceptable.