Kennedy Krieger Institute's first national online autism registry

October 2017

Research

Country of origin: USA

Kennedy Krieger Institute has the Interactive Autism Network (IAN) ? the first national online autism registry. Parents are filled with questions about autism, and, unfortunately, researchers are still struggling with many of the same questions. IAN brings these two groups together in a way that?s never been done before, through an online registry, to find answers.

Designed to drive autism research forward more quickly and efficiently, IAN facilitates the exploration of causes, treatments and the search for a possible cure to this puzzling disorder. The Kennedy Krieger project is spearheaded by the husband and wife research team of Drs. Paul and Kiely Law, physicians by training and parents of a 13-year-old son with autism. The IAN project will link researchers to parents, the people who know the most about their child, in two important ways:

Data Collection - Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN?s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.

Research Recruitment - IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.

?Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure,? said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. ?IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it.?

In addition to collecting data and recruiting participants for research, the IAN project hopes to engage the entire autism community ? from parents to policy makers to the media ? in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.

?By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukaemia community,? said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute. ?Thirty years ago, the majority of children with leukaemia died. Today, the majority survive because increased participation by a very organized research community led to discoveries of new and better treatments.?

Resources

My PearlPoint Cancer Side Effects January 2018 My PearlPoint Cancer Side Effects app provides nutrition guidance from oncology RDs, education articles, clinical trial...
myCME, continuing medical education January 2018 myCME, the fastest growing online source of continuing medical education for healthcare professionals, is available in a...
Clinical Trial Seek app January 2018 Clinical Trial Seek app is a NIH database of cancer clinical trials. One can search clinical trials in their geographic...
Endocrinology Advisor January 2018 Endocrinology Advisor is a free, simple to use, medical app that offers endocrinologists, diabetes educators and other...
Renal & Urology News (RUN) January 2018 Renal & Urology News (RUN) is the only medical tabloid for both practicing kidney specialists and urologists. With the RUN...
Neurology Advisor app January 2018 Neurology Advisor is a free, simple to use, medical app that offers neurologic healthcare professionals a comprehensive...
The Drugs & Bugs app January 2018 The Drugs & Bugs app by Monthly Prescribing Reference (MPR) is an essential resource for allied healthcare professionals,...
inPracticeŽ Oncology January 2018 inPracticeŽ Oncology is the only point-of-care clinical reference designed to meet the unique needs of specialists. Full...
The Importance Of Children In Clinical Studies December 2017 From asthma and cancer treatments to vaccines, research in children saves lives and improves their health and well-being. A...
Reducing the Inappropriate Use of Antibiotics December 2017 The National Public Health Service for Wales (NPHS) has published its second annual report from its Antimicrobial...
Search by Keyword