Special for The Republic | azcentral.com Mon Jun 24, 2013 2:28 PM
Matthew Huentelman wants a million people worldwide to take his test. He has about 992,400 more to go.
The Phoenix resident is building a database to collect information and study how cognition and memory change as people age. The goal? Help find a cure for Alzheimer’s disease and other brain disorders.
Huentelman, a scientific researcher at Phoenix-based Translational Genomics Research Institute, founded MindCrowd — a mass online scientific study aimed at studying memory in relation to genetics. It’s the first of its kind, he says.
“Before we can discover new treatments for brain-related diseases such as Alzheimer’s and Parkinson’s, we need to understand the human genetic blueprint — DNA — that determines how the brain works in healthy individuals,” he said. “Then, we will be better equipped to develop new medicines and therapies for individuals with brain disorders.”
The results so far have supported his hypothesis: Test performance decreases with age.
The beginning
Huentelman came to TGen about nine years ago after receiving his Ph.D. in physiology and genomics from the University of Florida, he said.
At the time, working with the human genome was novel, and he wanted to be a part of those scientific discoveries surrounding it, he said.
At TGen, Huentelman’s laboratory focuses on the study of autism, Alzheimer’s and aging.
In 2005, he worked on a collaborative, worldwide study examining the memory and genetics of 500 people. He thought, “Wouldn’t it be nice to study more people?”
Huentelman began collaborating with other scientific research institutions and organizations including the University of Arizona and Banner Alzheimer’s Prevention Initiative.
The name MindCrowd reflects two things — the brain they’re researching and the audience needed to complete that research, he said. The project team collaborated on everything, including the test questions.
The planning for the website was extensive, Huentelman said. It took about a year for the Lavidge Company to design the website, he said. The test launched April 1.
The test
Researchers have opened the 10-minute test to people from ages 18 to 80, and they’re looking for “a broad range of ages, backgrounds and cognitive abilities.”
There are two tests to take: One tests attention, the other tests memory.
In the first one, you click whenever you see a red ball appear on the screen.
The second test presents word pairs and tests how well you remember the association between the two, he said. This test takes about eight minutes, Huentelman said.
Participants must provide key demographic information and their names and e-mail addresses. Researchers use the information in their studies, and it allows test takers to compare themselves against others when they view their results, he said.
A bar on the website reflects the number of people who have taken the test and provides their e-mail address.
Of the 7,600 people who have taken the survey, more than 115 did so outside the United States. Many respondents have come from Canada, the United Kingdom, Australia, Germany, Sweden, New Zealand and France, according to a Jennifer Whittle of Lavidge.
Huentelman said he has mixed feelings about the responses thus far.
On the one hand, he said visitors are responding well to the site design and layout.
“We have very good success with people who visit the site with a high percentage of new visitors completing the entire test — 30 percent,” he said. “But on the other hand, I recognize that we have a big goal and task ahead of us and we need to significantly increase the amount of traffic to the site in order to reach our goals — so I recognize that there is a lot more work to be done.”
To promote the project, MindCrowd has both a Facebook and Twitter page to raise awareness of the project, as well as teaser posts on reddit and 4chan, he said.
Once they get enough people to take the test, the researchers will solicit some participants willing to donate a DNA saliva sample and undergo an additional round of online testing.
This will lead to a clinical trial to determine how people’s memory changes as they age and whether there are lifestyle choices that may lead to clues into Alzheimer’s and other brain disorders.
Researchers can’t ensure participants won’t cheat, and the project group entered into this knowing that, Huentelman said.
However, he said participants’ honesty is important in unraveling how the human brain works.
Funding
LeaseHawk CEO Mike Mueller initially funded MindCrowd, but he declined to disclose the amount.
He has invested in multiple software companies, but this is the first time investing in medical research, he said.
He will provide more funding as the project meets research milestones, and is searching for outside investors to contribute, Mueller said.
His reward: a chance at furthering research of Alzheimer’s disease and other memory problems, though he has no personal connections to Alzheimer’s disease research, Mueller said.
The project’s online setup could also inspire other scientific fields to conduct studies and reach larger audiences than ever before, Mueller said.
He said he took the online test and scored in the middle range. This means he won’t be a candidate for the second phase because researchers want people who score in the low and high percentiles, he said.
“It’s like trying to find a needle in a haystack,” he said.
Alix Langdon, director of implementations at LeaseHawk, said she was one of the beta testers for the website.
She went into the test not knowing what to expect and received a score of about 58 percent, she said.
She took the test a second time when there was a larger pool of subjects for comparison, Langdon said. She added she scored 100 percent.
“I think the pairings maybe resonated more in my memory, because I was exposed to it even just once before,” she said.
http://news.google.com/news/url?sa=t&fd=R&usg=AFQjCNET4KhvMLu28N9T217oTzGKhvv3lQ&url=http://www.azcentral.com/community/phoenix/articles/20130624tgen-scientist-wants-a-million-people-to-take-his-alzheimers-test.html
0 comments:
Post a Comment