ResearchMatch Launches First, Condition Specific Sub-registry

Did you know that only 5% of children with autism in the U.S. participate in clinical research studies each year, while nearly 90% of children with cancer are enrolled in research studies? This contribution has led to many new discoveries and positive outcomes for children with cancer. An increase in research participation by those in the autism community could yield similar gains.

Researchmatch (RM), the nation’s first nationwide, disease neutral, research volunteer recruitment registry launches sub-registry for Autism Spectrum Disorder (ASD). It continues to function as such, but now offers to researchers and volunteers the ability to also operate as a home for condition specific sub-registries like Autism Spectrum Disorder. ResearchMatch has created a new design with additional applications for its national registry of research volunteers and researchers. One of the most critical innovative roles in the new design is the ability to create and sustain condition specific sub-registries.

Recently, researchers in the field of Autism Spectrum Disorder, as well as those individuals who are on the spectrum, their families, and advocates participated in focus groups to identify a specific questions that helped to create the first Researchmatch “sub-registry” of individuals who share the condition known as Autism Spectrum Disorder. This team of key stakeholders identified a set of valuable queries to add to the volunteer registration process on ResearchMatch.org. This will add precision to the matching process of volunteers on the spectrum with researchers who are seeking volunteers for their studies.

More sub-registries will be added to ResearchMatch in the near future and will follow the format of development used to create this first sub-registry for Autism Spectrum Disorder (ASD) that is housed in the ResearchMatch (RM) database. All volunteers who have already registered on RM indicating ASD as one of their conditions will be prompted through newsletters, emails, and during login to the site to consider answering the optional questions about their condition. When new volunteers register and indicate a condition that has a sub-registry associated with it the volunteer will automatically be presented with optional questions that will assist in creating the sub-registries thus increasing the precision and prescreening process for matching volunteers and research teams.