The ZARD Natural History Study is the first and only natural history study for ZARD, launched in 2023, by Dr. David Bearden at the University of Rochester. It remains ongoing and is still actively recruiting families worldwide!

This remote study track’s ZARD’s progression through interviews, assessments, and exams every six months to two years. It builds critical data on symptoms, genotypes, phenotypes, sex differences, and outcomes.

Why participate? ZARD is ultra-rare, with highly variable symptoms, even within families. Every family’s input helps reveal patterns, improve prognosis understanding, guide better care, and support treatments. The more participants, the stronger the insights for current and future ZARD families.

We invite you to join and participate. It is conducted on video calls, it is flexible, and truly impactful. 

Here is the first published paper from the study (more to come as data grows) along with his presentation for families.