Laminopathies and Emerinopathies

Database and register collected at the Institute:

  • UMD-EMD: EMD Data Bank (www.umd.be/EMD/)
  • UMD-LMNA: LMNA Data Bank (www.umd.be/LMNA/)
  • UMD FHL1
  • National register OPALE: Observatory for PAtients With Laminopathies and Emerinopathies

 

Acronym

UMD-EMD

UMD-LMNA

UMD FHL1A, UMD FHL1B, UMD FHL1C

National register OPALE

Study Type Non-interventional data collection Non-interventional data collection Non-interventional data collection Non-interventional data collection
Pathology Emerinopathies  LMNA FHL 1A, FHL1B, FHL1C Laminopathies and emerinopathies
Principal investigator France Leturcq, Rabah Ben Yaou Gisèle Bonne, Rabah Ben Yaou Gisèle Bonne, Rabah Ben Yaou Karim Wahbi (PI), Gisèle Bonne, Rabah Ben Yaou (operational coordinators)
Sponsor Laboratoire de biochimie et génétique moléculaire, GH Cochin
+ Neuromuscular diseases Centres of Reference
+ Myology Centre of research, Institut de Myologie
Myology Centre of research, Institut de Myologie
+ UF de Cardiogénétique et Myogénétique Moléculaire et Cellulaire
Myology Centre of research, Institut de Myologie
+ UF de Cardiogénétique et Myogénétique Moléculaire et Cellulaire
Institute of Myology
Study status Ongoing Ongoing Ongoing Ongoing
Recruitment status Ongoing Ongoing Ongoing Ongoing
Population Adult Adult Adult Adult and child
Contact r.benyaou@institut-myologie.org r.benyaou@institut-myologie.org r.benyaou@institut-myologie.org k.chikhaoui@institut-myologie.org
+ infos on databases + infos on databases + infos on clinicaltrials.gov