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Spectrum: Autism Research News

Stunted growth

by  /  2 March 2012
THIS ARTICLE IS MORE THAN FIVE YEARS OLD

This article is more than five years old. Autism research — and science in general — is constantly evolving, so older articles may contain information or theories that have been reevaluated since their original publication date.

Very few members of the research community expected good news from President Obama’s proposed 2013 budget, released last month.

For biomedical researchers, that prediction came true: Funding for the National Institutes of Health remained flat at about $31 billion.

One of the losers in the proposed budget is the National Children’s Study (NCS), an ambitious effort to track 100,000 children in the United States from before birth through age 21.

The goal of the NCS, which began enrolling children for its pilot phase in 2005, is to examine how genetic, environmental and social factors influence child development and contribute to early-onset disorders, including autism.

Reliably parsing the contribution of these factors to disease requires a large sample size and correspondingly big budget. The proposed price tag has been controversial since its inception in 2004, and the project has repeatedly faced the threat of cuts.

This time, the plan includes a $28 million cut — about 15 percent — to the study’s budget, which will bring it down to $165 million in 2013.

According to an article in the journal Nature, administrators at the National Institutes of Health say they will deal with the newest cuts by changing recruitment methods, for example, by recruiting through healthcare providers rather than by going door to door. The latter is the gold standard for epidemiology research, because it delivers an unbiased sample. Administrators estimate that $30 million was spent on recruitment in 2011.

Data from the pilot phase of the study, which was designed in part to assess recruitment strategies, suggest that “recruiters are much more likely to find eligible women who are pregnant or trying to become pregnant” at healthcare provider offices than by going door to door.

But some of the study’s scientists told Nature that they are concerned about this change, and contend that:

recruitment at health-care-providers’ offices would bias the study and render its findings inapplicable to the wider population. They point to a 2008 Institute of Medicine report that called the household-based sampling approach one of the study’s main strengths.

The issue will be an important one in 2013, when the study’s main phase is set to begin. Recruitment for the pilot phase of the project, which enrolled 4,000 participants, was much slower than predicted.

Norway has a similar study well underway, the Norwegian Mother and Child Cohort Study (MoBa), that enrolled 100,000 pregnant women between 1999 and 2009. That project had a very different experience with recruitment. According to the Norwegian Institute of Public Health, the majority of pregnant women in the country were invited to participate, and about 44 percent chose to enroll.

The reason for that success? Socialized healthcare. An invitation to participate in the study was mailed out in conjunction with information regarding a routine ultrasound offered to all pregnant women in Norway at 18 weeks gestation.

Prospective studies of this scale are essential to understanding the complex factors that contribute to disorders such as autism. Scores of papers have come out of the MoBa cohort, shedding light on maternal factors that influence children’s health, for example. And the same will likely be true of the NCS. It would be a shame if these funding cuts undermined the enormous potential of such a project.