Duke University School of Medicine has launched the Lamin Registry of North America (LAMIN), a comprehensive initiative aimed at advancing research into LMNA-related diseases. This registry is part of the PRIORITY network, an international collaboration funded by the Leducq Foundation, linking research sites across North America and Europe.
LAMIN’s primary objectives include identifying genetic modifiers that influence the diverse manifestations of LMNA-mediated diseases, understanding the full phenotypic spectrum of LMNA variants, and investigating the natural history of these conditions. By collecting and analyzing de-identified data from various sites, the registry aims to offer insights into disease progression and potential therapeutic targets.
Enrollment is ongoing, and both patients and families affected by LMNA mutations are encouraged to participate. Self-enrollment is available, with medical records reviewed to confirm eligibility. All medical information is maintained with strict confidentiality. Researchers and collaborators interested in contributing to the registry are also invited to join this pivotal effort.
The LAMIN Registry is housed within Duke University Children’s Hospital, reflecting the institution’s commitment to improving patient outcomes through dedicated research and clinical engagement. The registry is led by Principal Investigator Dr. Andrew Landstrom, with key team members including Research Scientist Gabrielle Monaco and student Adi Bhaktaram.
This initiative represents a significant step forward in the collaborative effort to better understand and treat LMNA-related diseases, offering hope to affected individuals and their families.