SNAP: Measurement of the Subjective Perception of the Symptom in Hereditary Spastic Paraparesis (HSP)

  • STATUS
    Recruiting
  • participants needed
    80
  • sponsor
    IRCCS Eugenio Medea
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Updated on 16 February 2024
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Summary

The Self-Notion and Perception (SNAP) questionnaire developed at IRCCS E.Medea by Eleonora Diella and Roberta Morganti, arises from the need to quantify the subjective perception of the patient suffering from HSP of the typical symptoms of pathology, such as spasticity, weakness, changes in balance, resistance in walking, pain and fatigue. The purpose of this study is to validate this instrument and test its reliability, looking for correlations with the measurement scales used in the literature for the evaluation of the patient with HSP. The most used for this population are the Spastic Paraplegia Rating Scale (SPRS) and the Six-Minute Walk Test (6MWT) which assess the severity of the disease and the level of endurance (8-9) respectively.

Details
Condition Hereditary Spastic Paraparesis
Age 9years - 100years
Treatment SNAP questionnaire
Clinical Study IdentifierNCT04256681
SponsorIRCCS Eugenio Medea
Last Modified on16 February 2024

Eligibility

 Yes No Not Sure

Inclusion Criteria

diagnosis of genetically determined hereditary spastic paraparesis or subjects without defined genetics but who unequivocally show at the time of evaluation a dominant or recessive familiarity with exclusive involvement of the pyramidal system
age> 9 years
IQ> 80
The patient must be able to walk for at least 10 meters. Indoors, even with help

Exclusion Criteria

Age less than 9 years
IQ <80
loss of gait
psychopathological aspects that can affect the validity of the data collected
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