In February, the European-based SPATAX network announced the launch of an international registry for developing a Natural History of SPG11 and SPG15 types of HSP (NAT-HIS SPG 11/15).
SPATAX is a network of 69 research/clinical teams from 30 countries on 5 continents.
Aims of the Registry
NAT-HIS SPG11/15 aims to identify SPG11/15 prevalence, and to understand the pathologies and management of symptoms. Every neurologist, neuro-pediatrist, neuro-geneticist can log-in to the SPATAX database and register patients after they consent to be included.
Genetic data reporting (mutations, familial trees) and clinical assessments (scales and clinical exam data) can easily and quickly be uploaded to the database. Well-known, validated scales have been chosen to facilitate a global understanding of the diseases. Complementary exams are requested, cerebral and medulla MRI can be uploaded.
All data reported will be available to anyone who requests access, including people with HSP. The project will significantly advance knowledge of the natural history of SPG11 and SPG15 and potentially improve treatments currently being proposed and imagining new treatment avenues.
Share with your specialist: share this link with your doctor, who will submit your information to the registry: https://spatax.wordpress.com/2020/03/02/international-registry-for-natural-history-of-spg11-and-spg15-patients/
Currently ~20 SPG11 patients are registered as an example to see how to add records and register them. There is a quick tutorial to request access to NAT-HIS SPG11/15 and peruse the different clinical scales used.
For questions and comments, contact:
Brain and Spine Institute (ICM – Institut du Cerveau et de la Moelle épinière)
75646 Paris Cedex 13
Tel +33 18.104.22.168.69,
and also, via REDCap messenger.
To log into the NAT-HIS SPG11/15 database, go to: https://redcap-icm.icm-institute.org/
SOURCE: SPATAX News
International registry for Natural History of SPG11 and SPG15 patients