Fatigue Syndrome, Chronic

Bone Tumor

Quality of Life

the patient's Fatigue will be measured during the treatment period with antiblastic drugs and part of the followup period. To this end the BFI scale validated in Italian will be used (Mendoza et al 1999; Catania et al, 2013) which includes 9 items with a score for each of 0 to 10 and a consequent total score from 0 to 90. The measurement will take place in 4 times: the day of enrollment, 6 months, 12 months and 24 months after enrollment.the quality of life of patients measured by the EORTC QLQ C-30 scale (Aaronson et al, 1993) and the level of autonomy measured by the TESS scale (Davis et al, 1996) in 4 steps: the enrollment day , at 6 months, at 12 months and at 24 months from enrollment.

assessment scales (BFI, QLQ, TESS)

Paola Coluccino

The Assessment of Fatigue and Quality of Life in Patients With Bone Tumor,

The Assessment of Fatigue and Quality of Life in Patients With Bone Tumor, Undergoing Chemotherapy Treatment and Possible Predictive Factors

will be measured during the treatment period with antiblastic drugs and part of the followup period. To this end the Brief Fatigue Inventory scale validated in Italian will be used which includes 9 items with a score for each of 0 to 10 and a consequent total score from 0 to 90.

Quality of life of patients measured by the European Organisation for Research and Treatment of Cancer quality of life scale

Nurse coordinator

Istituto Ortopedico Rizzoli

The Intervention group will received multimedia education, booklet and weekly tele-nursing follow-up about chemotherapy and side effects management

The Control group will receive routine care

Chemotherapy Effect

Multimedia education, booklet and weekly tele-nursing follow-up is about chemotherapy and side effects management

Multimedia education, booklet Providence and tele-nursing follow-up

Indus Children Cancer Hospital Karachi

Effect of Nurse-led Education on Parent's Anxiety and Depression on Managing Side Effects of Chemotherapy

Depression (D) and anxiety (A) and stress(S) will be outcome variable. They will be identified by using DASS-21 Scale. The use of DASS-21 Scale is evident in Pakistan . There are 21 questions in this scale equally divided in to three parts having seven questions for Depression, Anxiety and stress respectively. Each question have four level of measurement 0,1, 2 and 3, represent past week experiences. 0 means not applicable to person, 1 means applicable to some degree or sometime, 2 means applicable to considerable degree or good part of time, 3 means applicable to person very much or most of the time. Each question is separate for Stress(s), Anxiety (a) and Depression (d).

Nomi Waqas Gul

Principal Investigator

Indus Hospital

The sample size calculated was 30 samples per group. After adjusting error in non-response of data collection 50 samples will be drown from each group. Total 100 caregivers along with their children will be selected.

Stratified response to EnzymeTherapy Substrate Reduction Therapy (expected) Splenectomy (and interactions)

Stratified response to Enzyme Therapy and Substrate Reduction Therapy- Splenectomy (and interactions)

Urine, Blood (Plasma, Serum, EDTA) Fresh Tissue, Biopsy, Bone Marrow Aspiration & Cerebro-spinal fluid (rarely).

Gaucher Disease, Type I

Gaucher Disease, Type III

Observational study involves review of retrospective and prospective data of participants' medical history, pathology, imaging and health questionnaires.

Stratified response to Enzyme Therapy

Birmingham Childrens Hospital

New Queen Elizabeth Hospital

Cambridge University Hospital

Great Ormond Street Hospital

National Hospital for Neurology and Neurosurgery

Royal Free Hospital

Royal Manchester Childrens Hospital

Salford Royal NHS Foundation Trust

Gaucherite - A Study to Stratify Gaucher Disease

Predictive Measures to Stratify Clinical Outcomes in Children and Adults With Gaucher Disease and Responses to Specific Therapies

Dual energy absorptive photiometry (DEXA) will allow us to measure the bone mineral density (BMD g/cm2) to enable stratification into treatment strands and predict and prevent future fragility fractures.

Biochemical biomarkers (PARC/CCL18 ng/ml and Chitotriosidase umol/L/h) will be used to perform decease severity and follow-up response to treatment.

MRI will allow us to assess the extent of Bone Marrow involvement and thus response to treatment by using the Bone Marrow Burden Score (BMB). The BMB is a semi quantitative MRI scoring system, using the sagittal T1 and T2 images of the lumbar spine and the coronal T1 and T2 of the femurs.

MRI will allow us to assess new avascular necrosis events (osteonecrosis).

Frontal Assessment Battery (FAB) is used to assess early cognitive impairment in Type III patients and patients with diagnosis of Parkinson disease.

Addenbrooke's Cognitive Examination - ACE-R and National Adult Reading Test are used in combinations to establish attention and orientation, memory, fluency, language and visuospatial orientation

Modified Severity Scoring Tool (MSSt) is used to monitor neurological manifestations of NGD (Type III).

Characterisation of new biomarkers in the peripheral blood mononuclear cells. (PBMCs), lipid analysis and Metabolomics screen.

SF36; will be used to assess the patient reported quality of life. It is a generic measure of health status, as opposed to one that targets a specific age, disease, or treatment group. It has proven useful for conducting surveys of general and specific populations, comparing the relative burden of diseases, and differentiating the health benefits produced by a wide range of treatments.

EQ5D5L; the dimensions are (mobility, self care, usual activities, pain/discomfort, anxiety/depression). it provides a simple descriptive profile and a single index value for health status that can be used in the clinical and economic evaluation of health. This tool will help facilitating the calculation of quality-adjusted life years (QALYs) that are used to inform economic evaluations of health care interventions.

Hospital anxiety & depression scale (HADs); Assist researchers in detection of emotional disorder in patients under investigation and treatment

PedsQL (multidimensional fatigue scale); Enable researcher to assess if there is a link to level of patient reported fatigue and disease severity

PedsQL qual of life for paediatric ages. To assess participant reported quality of life.

Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS) is a clinical rating scale for Parkinson's disease (PD)

Biobank storage of historical and prospective human samples.

Objective quantifiable eye examination measuring eye movement

A Data sharing policy will be developed at the end of the study. Researchers will be able to make ethically approved requests to the Data owners for specific data (a charge will be made). What data sets will be available has yet to be decided by the Gaucherite Consortium Group.

Timothy Cox MD

Professor of Medicine Emeritus, Director of Research, Honorary Consultant

Cambridge University Hospitals NHS Foundation Trust

Medical Research Council

National Institute for Health Research, United Kingdom

Children and adolescents will receive the study intervention, which includes exercise coaching and prescription, that is be incorporated into the standard care they receive from the nurse practitioners during their outpatient visits.

bone neoplasms/trötthet

The Assessment of Fatigue and Quality of Life in Patients With Bone Tumor,

Effect of Nurse-led Education on Parent's Anxiety and Depression on Managing Side Effects of Chemotherapy

Gaucherite - A Study to Stratify Gaucher Disease

KAM: Kids Are Moving

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