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

IRCCS Eugenio Medea

Status: Completed

Conditions: Hereditary Spastic Paraparesis

Treatments: Other: SNAP questionnaire

Study type: Interventional

Funder types: Other

Identifiers

NCT04256681

GIP 595

Details and patient eligibility

About

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.

Enrollment: 80 patients

Sex: All

Ages: 9+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Other

Allocation: Non-Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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80 participants in 2 patient groups

patients affected by hereditary spastic paraplegia

Experimental group

Description:

40 subjects affected by genetically determined hereditary spastic paraparesis or subjects without defined genetics but who unequivocally show a dominant or recessive familiarity with exclusive involvement of the pyramidal system.

Treatment:

Other: SNAP questionnaire

healthy subjects

Active Comparator group

Description:

40 healthy subjects will also be recruited to whom the questionnaire will be submitted to assess the variability of the score within a healthy population.

Treatment:

Other: SNAP questionnaire