Registry established for SPG11 and SPG15

Posted - May 2020 in HSPRF News

Participation invited

 

Launch

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.

 

Reporting

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.

 

Access

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.

 

Contact

For questions and comments, contact:

[email protected]

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,

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

https://spatax.wordpress.com/2020/03/02/international-registry-for-natural-history-of-spg11-and-spg15-patients/

International registry for Natural History of SPG11 and SPG15 patients

By SPATAX / March 2, 2020 / news

 

 

 

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