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.  
Here at The Road, our team is as divided on this issue as well.  We all have different views about research in general and specifically when it comes to projects like Ds-Connect (the national Down syndrome registry), and cognitive enhancement.  As a result, we present different perspectives and welcome polite discussion about all kinds of Ds research.

Research on The Road We've Shared

Cognition Research

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:

Really, the ultimate goal of this [cognition research] is creating new opportunities for every individual with Down syndrome be they children or adults; to live more independent lives, to participate more successfully in schools and employment, and ultimately…to prevent the additional cognitive decline that comes along with the earlier onset of Alzheimer’s disease in individuals with Down syndrome.

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.

Research on The Road

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

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.

NIH and The Road We've Shared

Melissa Parisi and Sujata Bardhan from NIH with Stephanie Holland at NDSC Convention in Indianapolis

Alzheimer’s Disease

Alzheimer's Disease and Down syndrome

Of course, the biggest news and focus on research in our community concerns the link between Alzheimer’s disease and Down syndrome.  

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.  

Endless Possibilties

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.

Median age at death of persons with Down syndrome by race - 1968-1997

We’ve posted a petition to gather support for advocacy around this issue.  We feel that it’s important enough to be a top priority for our national organizations.  If you think so too, please sign our petition and share it within your networks.

I want to know why!

Tweet: I want to know why! Research needed for life expectancy by race with Down syndrome. #DsRoad

We’ll continue to post news from around the web regarding all kinds of research in our weekly newsletter - Signposts on The Road, in our regular blog, and in the Research Corner of our website.

Whatever corner you’re in when it comes to Down syndrome research, we hope you’ll join in the discussion here on The Road.  Tell us your concerns.  Why do you support research? What kind of research is most important to you?