Audentes Therapeutics has initiated its first study of X-Linked Myotubular Myopathy (XLMTM), entitled RECENSUS: A Medical Chart Review of Patients with XLMTM.  RECENSUS is a Latin word which means to review and investigate. The goal of this study is to collect information from medical charts in order to characterize aspects of the condition and associated medical care for males with XLMTM.

 

This is a retrospective, non-interventional study, meaning there is a review of past care. It does not require visits to a study site or any medical procedures.  

 

We hope that this study will contribute considerably to the understanding of XLMTM. If you are interested in having your or your child’s medical chart included in the study, please follow the link below for more information about the study and participating sites:  
 

https://clinicaltrials.gov/ct2/show/NCT02231697?term=audentes&rank=1

Those patients enrolled in the Begg’s registry do NOT need to do anything else. Their data is already being included in the study. Participation in this study does not influence the selection of patients for the clinical trial.

For any further questions, please contact:
 

Barbara H. Wuebbels, RN, MS

Vice President of Patient Advocacy

Audentes Therapeutics Inc.

Cell 480-437-0192
email bwuebbels@audentestx.com

*********************************************************************

For those of you new to MTM, please download The Family Guide for Myotubular Myopathy created by JFF's Educational Advisory Board. This is a fantastic guide to share with all of your child's caregivers and clinicians. 

Also, if you haven't already, please 'Like' us on Facebook - we love to stay in touch with our community via social media! 

Alison Rockett Frase | PO Box 2041 Ponte Vedra, Fl 32004 | 904-607-1358