We are very excited to announce the launchof FAR’s independent patient registry, a major step in our ongoingefforts to advance clinical-trial readiness for ARID1B-related disorder.

FAR’s registry is designed to collecthigh-quality, longitudinal data from ARID1B families. Families will be invitedto complete surveys each year, building a natural history resource that cansupport future treatment-focused research and clinical-trial readiness.

Why FAR is building an independentregistry

This registry stands at the heart of FAR’sstrategy to build the information and infrastructure needed for futuretherapeutic development. Our goal is to collect clinically meaningfulinformation that can help researchers, clinicians, and therapeutic developersbetter understand ARID1B-related disorder and prepare for future clinicaltrials.

We have learned from, and remain inconversation with, other groups collecting related data, and we value theseefforts. FAR’s independent registry complements this work by allowing us toselect the specific measures most relevant to ARID1B-RD, follow familieslongitudinally over time,  and focusdirectly on the outcomes that will matter most for treatment development andmeaningful outcomes for our children.

More than a registry: a natural historyresource

Although this project is officially apatient registry, it will also collect enough information to function as anatural history study. This means that, by completing surveys again each year,families will help us better understand development and change over time inARID1B-related disorder.

The content of the registry was developedcarefully. We consulted with leading experts and selected surveys and measurescovering the key areas of functioning in which individuals with ARID1B-relateddisorder often experience difficulties. These data will help us bettercharacterize the condition, track change over time, identify meaningfuloutcomes, and support future treatment-focused research.

How families can help now

Every family that participates helps buildthe evidence base needed to move the field forward. This is one of the mostdirect contributions our community can make toward the shared goal ofdeveloping treatments for our children.

To enroll – please click here.

For questions, please contact us at families@arid1b.org.

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