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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| UPART intervention group | Experimental | 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). |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 'Uptime' participation | Other | The intervention are designed for each individual and are consistent with the model for participation-based interventions. The interventions are goal-oriented (meaningful and family/client-selected goals), family/client-centered (promoted self-determination and decision making), collaborative (partnership between caregivers), strength-based (built on participant and caregiver strengths) and ecological (natural environment and real-life experiences). Design of the intervention comprised three steps: 1) Preparation period (6 weeks); 2) Intervention period (12 weeks); 3) Follow-up period (12 weeks) |
| Measure | Description | Time Frame |
|---|---|---|
| ActivPAL | Change in sedentary time | Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up |
| Stepwatch Activity Monitor | Change in daily step count | Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up |
| Measure | Description | Time Frame |
|---|---|---|
| Rett Syndrome Gross Motor Scale | Change in gross motor skills | Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up |
| 2 minute walk test |
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Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Center for Rett syndrome, Department of Paediatrics and Adolescents Medicine | Copenhagen | København Ø | 2100 | Denmark |
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| ID | Term |
|---|---|
| D015518 | Rett Syndrome |
| ID | Term |
|---|---|
| D038901 | X-Linked Intellectual Disability |
| D008607 | Intellectual Disability |
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
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|
Change in walking capacity
| Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up |
| Quality of Life Inventory - Disability, questionnaire | Change in quality of life. The Quality of Life Inventory-Disability was used to assess quality of life. This 32 item-questionnaire was developed for children 5-18 years of age with ID. Responses are used to calculate an overall score and six subscale scores (social interaction, positive emotions, physical health, negative emotions, leisure/outdoors and independence), each scored on a 0-100 scale with higher scores representing better quality of life. | Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up |
| Goal attainment scaling | Change in participation level goals. Goal attainment scaling is a validated method for evaluating achievement of individual goals. Individual goals were assessed on a five-point rating scale ranging from -2 to +2. Baseline was set at -2, the expected level after the intervention at zero and the most favorable outcome at +2. The goals were graded in relation to frequency or duration of an activity. | Assessed twice; at baseline and after the 12 week intervention |
| D009422 | Nervous System Diseases |
| D040181 | Genetic Diseases, X-Linked |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D020271 | Heredodegenerative Disorders, Nervous System |