'Uptime' Participation Intervention in Girls and Women With Rett Syndrome

Rigshospitalet

Status: Completed

Conditions: Rett Syndrome

Treatments: Other: 'Uptime' participation

Study type: Interventional

Funder types: Other

Identifiers

NCT03848442

Center for RTT- 2017

Details and patient eligibility

About

The aim of the study is to evaluate the feasibility and health-related effects of an individualized 12wk 'uptime' participation intervention in girls and women with Rett syndrome. Girls and women above 5 years of age with Rett syndrome and a confirmed MECP2 mutation will be included. Each individual program focuses on participation in enjoyable activities to promote 'uptime' in home, school/day center and community settings. Primary outcomes are sedentary time and daily steps. Secondary outcomes are gross motor skills, walking capacity, quality of life and participation-level goals. Outcomes are evaluated on four occasions: at baseline and after a 6-week interval, immediately following the 12-week intervention program and 12 weeks after the intervention program.

Enrollment: 14 patients

Sex: Female

Ages: 5+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Girls and women above 5 years of age with Rett syndrome and a confirmed MECP2 mutation
• Hoffer ambulation scale levels I-IV

Exclusion criteria

• Girls and women who have undergone orthopedic surgery in the lower extremities within the last 6 months
• Girls and women who have undergone spinal fusion within the last 12 months

Trial design

Primary purpose: Other

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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14 participants in 1 patient group

UPART intervention group

Experimental group

Description:

A 1-group pretest-posttest design was conducted. Outcomes were evaluated on four occasions; twice during baseline separated by six weeks and immediately following a 12-week 'uptime' participation intervention and after a further 12 weeks (follow-up).

Treatment:

Other: 'Uptime' participation