Research

Enroll in Research

Here are a few researchers working on Titin that you can contact:

Beggs Laboratory
Boston Children’s Hospital
Casie Genetti, Genetic Counselor
Ph: 617-919-2169
cgenetti@enders.tch.harvard.edu


Study of atypical titinopathies, including persons with skeletal or cardioskeletal symptoms and single TTN variants.
Jen Roggenbuck, MS, CGC (Genetic Counselor)
Ohio State University
Jennifer.Roggenbuck@osumc.edu


Gene and heart disease research:
Prof. Diane Fatkin, MD
Victor Chang Cardiac Research Institute and St Vincent’s Hospital, Australia
d.fatkin@victorchang.edu.au

For help with diagnosis:
Prof Bjarne Udd, MD, PhD
Tampere Neuromuscular Center
Folkhälsan Research Institute, Helsinki
bjarne.udd@netikka

Titin research publication library hosted by Cure CMD see here.

Please enroll in The Congenital Muscle Disease International Registry! www.cmdir.org