THE ORGANISATION

Registries and databases

Collecting epidemiological and natural history data on neuromuscular diseases

Registries and databases

Prof. Karim Wahbi, MD, PhD

Prof. Karim Wahbi is a cardiologist at the Institute of Myology and in the cardiology department of Cochin Hospital. He is the team leader for Registries and Databases.

The team is dedicated to developing and running nine databases, registries, observatories and cohort follow-up studies in the Île-de-France region and nationwide. Its aims are in particular to collect epidemiological and natural history data, to assess the effect of treatments and to prepare future therapeutic trials. It works in conjunction with the MyoData platform, which is also responsible for the biostatistics and bioinformatics side of research projects.

Team members

Karim Wahbi, cardiologist, team leader
Rabah Ben Yaou, neurologist
Khadija Chikhaoui, clinical research associate (CRA)
Nawal Berber, CRA
Nadgib Taouagh, CRA
Néjette Lallouche, CRA

Ongoing projects

Registries

  • National OPALE registry (Observatory for patients with Laminopathies and Emerinopathies),  principal investigator Prof. Karim Wahbi, operational coordinators: Drs G. Bonne, R. Ben Yaou and K. Wahbi.
  • The French Pompe disease registry, principal investigator Prof. P. Laforet.
  • “Becker-Cœur” registry as part of the observational study “Cardiac involvement in Becker muscular dystrophy: assessment of prognostic markers”, principal investigator Prof. K. Wahbi.
  • “Mitochondriopathies” registry as part of the observational study “Prospective follow-up of a cohort of adult patients with mitochondrial diseases”, principal investigator Prof. P. Laforet.
  • “GSDIII” registry as part of the observational study “Prospective follow-up of patients with glycogen storage disease type III”, co-principal investigators Prof. P. Laforet and Prof. P. Labrune. 

Databases

  • UMD-LMNA and UMD-FHL1 locus-specific databases coordinated by Dr G. Bonne and Dr R. Ben Yaou.
  • UMD-EMD locus-specific database coordinated by Dr Fr Leturcq and Dr R. Ben Yaou.
  • UMD-DMD locus-specific database coordinated by Dr Fr Leturcq, Dr S. Tuffery-Giraud and Dr R. Ben Yaou.

More details on the registries, databases and ongoing clinical trials at the Institute.