Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
HCPs will complete questionnaires about their patients with Cerebral Palsy (CP) and invite parents/caregivers of these patients to fill in questionnaires as well. Questionnaires include questions on individualized treatment, nutritional profile and management, and patient characteristics.
Coordinating health care professionals (HCPs; e.g. paediatric neurologists, physiotherapists) in different centres across different countries will be asked to participate in this cross-sectional study.
A) for the HCP to fill out a questionnaire about their CP child, related to general subject characteristics, motor function, co-morbidities, type of therapies, anthropometry, feeding mode and nutritional status; and B) for parents (/legal representatives) to receive and fill out questionnaires about their CP child and themselves, related to general subject characteristics, motor function, co-morbidities, type of therapies, anthropometry, feeding mode and nutritional status, participation and (their own) quality of life.
If parents (/legal representatives) agree to "A)", but not "B)" then a subject will still enter the study, but without the parental assessment.
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Children and youth with cerebral palsy | Subjects between 1 month and 18 years of age with Cerebral Palsy who visited the coordinating HCP within the past 12 months. |
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| Quantify current CP characteristics 1 (general subject characteristics): | Using questionnaires to quantify current CP characteristics with respect to: - General subject characteristics (e.g. Sex, Birth weight [g], Type of CP motor disorder [category] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 2 (anthropometry): | Using questionnaires to quantify current CP characteristics with respect to: Anthropometry: length [cm]; weight [grams] and BMI (kg/m2) | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 3 (motor function) | Using questionnaires to quantify current CP characteristics with respect to: Motor function (GMFCS [category]; GMFM measurement type [GMFM-86/GMFM-88] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 4 (comorbidities) | Using questionnaires to quantify current CP characteristics with respect to: Comorbidities: epilepsy, cognitive function, GI problems [categories] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 5 (therapies) | Using questionnaires to quantify current CP characteristics with respect to: Type and frequency of physical/occupational therapy [type, number of hours per day /days per week] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 6 (feeding mode) |
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| Quality of life and participation 1 | Questionnaire to assess Quality of Life of subjects with CP [scores on domains] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quality of life and participation 2 |
Inclusion Criteria:
Exclusion Criteria:
Not provided
Not provided
Subjects between 1 month and 18 years of age with Cerebral Palsy
Not provided
Not provided
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Fakultní nemocnice v Motole | Prague | Czechia | ||||
| Attikon University General Hospital |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 34473588 | Derived | Fogarasi A, Fazzi E, Smorenburg ARP, Mazurkiewicz-Beldzinska M, Dinopoulos A, Pobiecka A, Schroder-van den Nieuwendijk D, Kraus J, Tekgul H; PURPLE N study group; Czech Republic:; Kraus J; Greece:; Dinopoulos A, Koutsaki M; Hungary:; Fogarasi A; Italy:; Baranello G, Bertoli S, Caramaschi E, Cordelli DM, De Amicis R, Fazzi E, Forchielli ML, Guerra A, Lividini A, Marchio M, Rossi A; Netherlands:; Nieuwendijk DSD; Poland:; Flicinski J, Gurda B, Lemska A, Matheisel A, Mazurkiewicz-Beldzinska M, Niwinska Z, Pawlowicz M, Sawicka A, Steinborn B, Szmuda M, Winczewska-Wiktor A, Zawadzka M; Slovakia:; Pobiecka A; Turkey:; Arhan E, Aydin K, Bayram E, Carman KB, Edem P, Ertem D, Goktas OA, Gungor S, Haliloglu G, Kansu A, Komur M, Mutlu A, Kirsaclioglu CT, Okuyaz C, Ozgor B, Ozturk Y, Sager SG, Sarigecili E, Selimoglu MA, Serin HMO, Teber ST, Tekgul H, Thomas G, Turkdogan D, Volkan B, Yarar C, Yilmaz SK. The PURPLE N study: objective and perceived nutritional status in children and adolescents with cerebral palsy. Disabil Rehabil. 2022 Nov;44(22):6668-6675. doi: 10.1080/09638288.2021.1970255. Epub 2021 Sep 2. |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Using questionnaires to quantify current CP characteristics with respect to: Feeding mode and/or problems (tube feeding [yes/no], type of tube feeding etc) |
| Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quantify current CP characteristics 7 (nutritional status) | Using questionnaires to quantify current CP characteristics with respect to: Nutritional status (HCP and parent perspective on nutritional status, concerns [yes/no]) | Data collected retrospectively, from within 12 months of entering the questionnaire |
Questionnaire to assess Quality of Life of parents (/legal representatives) of subjects with CP [scores on domains]
| Data collected retrospectively, from within 12 months of entering the questionnaire |
| Quality of life and participation 3 | Level of participation included in the general parent questionnaire [categories] | Data collected retrospectively, from within 12 months of entering the questionnaire |
| Athens |
| Greece |
| Bethesda Children Hospital Budapest | Budapest | Hungary |
| AO Sant'Orsola - Malpighi, Policlinico | Bologna | Italy |
| ASST degli Spedali Civili di Brescia | Brescia | Italy |
| Fondazione IRCCS Istituto Neurologico "Carlo Besta" | Milan | Italy |
| AOU di Modena - Policlinico | Modena | Italy |
| Roessingh centrum voor Revalidatie | Enschede | Netherlands |
| Medical university hospital of Gdansk | Gdansk | Poland |
| Szpital Kliniczny im. Heliodora Święcickiego Uniwersytetu Medycznego im. Karola Marcinkowskiego w Poznaniu | Poznan | Poland |
| Fakultná nemocnica Trnava | Trnava | Slovakia |
| Ankara University School of Medicine/Neurology | Ankara | Turkey (Türkiye) |
| Gazi University School of Medicine/Neurology | Ankara | Turkey (Türkiye) |
| Hacettepe University School of Medicine/Neurology | Ankara | Turkey (Türkiye) |
| Ege University School of Medicine/Neurology | Ege | Turkey (Türkiye) |
| Eskisehir Osmangazi University School of Medicine/Neurology | Eskişehir | Turkey (Türkiye) |
| Dokuz Eylul University School of Medicine/Neurology | Izmir | Turkey (Türkiye) |
| Inonu University School of Medicine/Neurology | İnönü | Turkey (Türkiye) |
| Marmara University School of Medicine/Neurology | Marmara | Turkey (Türkiye) |
| Mersin University School of Medicine/Neurology | Mersin | Turkey (Türkiye) |
| ID | Term |
|---|---|
| D002547 | Cerebral Palsy |
| ID | Term |
|---|---|
| D001925 | Brain Damage, Chronic |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
Not provided
Not provided