SPATAX is happy to announce the launching of an international registry for Natural History of SPG11 and SPG15 patients (NAT-HIS SPG 11/15)
During the last SPATAX congress, the importance to have a common database with all our centers in order to register and follow patients affected by rare disease was highlighted by all of us. Therefore, we are launching an international registry for SPG11 and SPG15 patients, called “NATural HIstory of SPG11 and 15”.
NATHIS SPG11/15 aims to identify SPG11/15 prevalence, to understand the pathologies and management of symptoms. Every neurologist, neuro-pediatrist, neuro-geneticist can log into the SPATAX data base and register patients after they consented to be included. Genetic data reporting (mutations, familial trees …) and clinical conditions (scales and clinical exam) can easily be implemented in this database in very short time. In addition, we deliberately use validated well-known scales to allow a global understanding of the diseases. Complementary exams are requested, cerebral and medullar MRI can be uploaded.
All data reported will be visible to anyone who requests an access and includes patients. This project will permit an important improvement in our knowledge of the natural history of SPG11 and SPG15 and potentially improve the treatments currently proposed and to imagine new treatment avenues.
For the moment, ~20 SPG11 patient is registered as an example – you can already see how to complete and then register your patients. You will find attached a quick tutorial to request access to NAT-HIS 11/15 and show you the different clinical scales used.
Let’s get started and many thanks to everyone interested by NAT-HIS 11/15!
A newsletter will follow in 6 months, updating everybody on the inclusion rate and news in research about SPG11/15.
We remain at your disposal for further questions and remarks:
pauline.lallemant@icm-institute.org
Brain and Spine Institute (ICM – Institut du Cerveau et de la Moelle épinière)
Pitié-Salpêtrière Hospital
CS21414
75646 Paris Cedex 13
France
Tel +33 1.57.27.46.69,
but also, via REDCap messenger.
To log into the NAT-HIS SPG 11/15 data base, you have to click on the link below:
https://redcap-icm.icm-institute.org/
SPATAX Network : Clinical and Genetic Analysis of Spastic paraplegia and Ataxia 