$1.2-Million Grant Builds Database to Spur Autism Research

September 22, 2013 | Read Time: 1 minute

Scientists and medical professionals in Rhode Island hope that creating a powerful database will drive much-needed research on autism.

The Rhode Island Consortium for Autism Research and Treatment won a $1.2-million grant from the Simons Foundation to build a confidential registry of all the people in the state who have been diagnosed with the condition.

Researchers with the consortium will conduct a sophisticated assessment of each participant and ask family members a series of questions about topics such as participants’ communication skills and behavior. Participants will also have the option of donating blood for an accompanying tissue bank for future research.

The statewide registry is the first of its kind, says Beth Jerskey, the consortium’s research coordinator. She says that as the registry grows, scientists who have been vetted by the consortium will be able to analyze the information in the database and use it to recruit participants for studies, saving them time and effort. “We’ve already gathered a group of families who are willing to be involved in research.”

The consortium hopes to hold open forums where families can learn about research projects, ask questions, and share their ideas and concerns.

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NICOLE WALLACE

Features Editor

Nicole Wallace is features editor of the Chronicle of Philanthropy. She has written about innovation in the nonprofit world, charities’ use of data to improve their work and to boost fundraising, advanced technologies for social good, and hybrid efforts at the intersection of the nonprofit and for-profit sectors, such as social enterprise and impact investing.Nicole spearheaded the Chronicle’s coverage of Hurricane Katrina recovery efforts on the Gulf Coast and reported from India on the role of philanthropy in rebuilding after the South Asian tsunami. She started at the Chronicle in 1996 as an editorial assistant compiling The Nonprofit Handbook.Before joining the Chronicle, Nicole worked at the Association of Farmworker Opportunity Programs and served in the inaugural class of the AmeriCorps National Civilian Community Corps.A native of Columbia, Pa., she holds a bachelor’s degree in foreign service from Georgetown University.