Finding Experts on Rare Diseases: Usher Syndrome

Jun 19

Request

A healthcare consulting firm working with a Pharma company approached Zintro for help on a project where Usher Syndrome (types I-III), its cures, treatments, and more were being researched. Usher Syndrome is a rare genetic disorder that can cause patients to lose their hearing, vision, and balance over time. It’s believed there are around 400,000 people with Usher Syndrome worldwide (Usher Syndrome Coalition). The firm wanted to speak with KOL’s that had been studying Usher Syndrome for over 15 years, worked with patients themselves, and had experience with clinical trials. Additionally, they wanted to speak with geneticists that had strong understandings of MYO7A and CDH23 genes.

Solution

To help the client gain a 360º view of the space, Zintro recruited experts that focused on Usher Syndrome in both adults and adolescents, as well as geneticists with expertise on two primary gene mutations. As is the case with many rare diseases, Zintro had only a few relevant experts in its database, making custom recruitment essential for the projects success. The team was able to identify and recruit top experts from scientific studies, authors of published works, and association related to Usher Syndrome.

Results

Zintro presented 13 expert profiles to the firm, including four individuals that focused on all patients, two that focused on Usher Syndrome in children, and two geneticists with expertise on MYO7A and CDH23 gene mutations. The selected professionals took part in 60 minute in-depth interviews and shared their knowledge with the consulting firm. The firm was very pleased with the results of the study, stating “Thank you so much for your great work on this project Zintro team! That was a really tough one and you guys rocked it!”

By the Numbers