NEW YORK – CureDuchenne has partnered with the University of California, Irvine, and RUCDR Infinite Biologics on a biobanking project.
CureDuchenne said in a statement it would begin collecting blood and skin samples from volunteer patients with Duchenne muscular dystrophy at its events around the US. When possible, it will also collect samples from "unaffected immediate blood relatives" including parents, siblings, and adult children.
Financial and other details were not disclosed.
"Having access to patient cells is the first step in pursuing precision medicine initiatives that will enable us to facilitate families getting involved and engaged in research, and ensure all stakeholders are able to conduct research for all individuals living with Duchenne," said Romina Foster-Bonds, director of programs at CureDuchenne and lead for the CureDuchenne Biobank.
CureDuchenne is a not-for-profit organization that advocates for people affected by Duchenne muscular dystrophy, an X chromosome-linked recessive disorder caused by a mutation of the dystrophin gene. In 2017 the organization gave $5 million in seed financing to Exonics Therapeutics.
RUCDR is a biospecimen repository and services provider based in Piscataway, New Jersey. It was formed in 1998 as the Rutgers University Cell and DNA Repository.
The CureDuchenne Biobank board will include experts in biorepositories and registries, technology transfer, genetics, neuromuscular disease, immunology, and ethical, legal and social issues. UCI School of Medicine professors Tahseen Mozaffar and Armando Villalta will lead the board along with CureDuchenne executives.
CureDuchenne said the board will determine access to the biobank's samples and deidentified data and samples.
"To help ensure that Duchenne patients from all population groups can potentially benefit from the research, Duchenne patients from diverse age ranges, ambulatory status, genetic mutations, and racial, cultural and socioeconomic groups are strongly encouraged to participate in this initiative," CureDuchenne said in a statement.