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Quality of life/care and long term effects

Here you will find summaries of a selection of ongoing clinical trials on the quality of life/care and long term effects of treatment (LATER).
Open for inclusion:

APPROACH  Study on the experiences of children with cancer (or their parents) with symptoms and the development of a symptom app - open for inclusion

Cancer in Pregnancy (CIP): long term follow-up of the children  Clinical study into the short and long-term development of children who were prenatally exposed to any type of maternal cancer and/or treatment - open for inclusion

Educational priorities (pediatric cancer)  What is important for a pediatrician to know and do when a child has suspected pediatric cancer? Educational priorities in a new pediatric oncology curriculum for general practice pediatricians - open for inclusion

ERNIE study (brain tumors)  Clinical study into an individualized neuropsychological intervention for children with a brain tumor - open for inclusion (Dutch speaking only)

FOLLOW-ON study (ALL)  Clinical study investigating the long-term outcome of childhood acute lymphoblastic leukemia (ALL) survivors who have experienced symptomatic osteonecrosis during or shortly after discontinuation of treatment - open for inclusion

Follow-up clinic bone sarcomas (Osteosarcoma & Ewing sarcoma)  Clinical study of long term functioning after surgery or radiation therapy for a pediatric bone sarcoma - open for inclusion

KinderOncoNet  Determine the needs of children with cancer, their parents, survivors and healthcare professionals for care close to home and developing a multidisciplinary care network called KinderOncoNet - open for inclusion (Dutch-speaking only)

KLIK-PROM portal  Study into the improvement of the KLIK-PROM portal - open for inclusion

Long-term HIT (Stem cell transplantation)  Clinical study investigating blood production in stem cell transplantation survivors - open for inclusion

MetVasA (SCT survivors)  Clinical study of specific late effects of hematopoietic stem cell transplantation in childhood -open for inclusion

PROMIS-2 (Measuring quality of life)  In this medical research study, we aim to assess whether the quality of life in children with cancer can be effectively measured using PROMIS-questionnaires - open for inclusion (Dutch speaking only)

SENSORY-2: a follow up  Clinical study of smell and taste changes in childhood cancer survivors - open for inclusion

TRINGQS study (Tinnitus) Clinical study of tinnitus and its relation with hearing loss, biomarkers, genetics and quality of life in childhood cancer survivors - open for inclusion

Closed for inclusion:

ChIMES feasibility study  Clinical study to find out whether it is practically feasible in daily care to use an oral score list that is completed by a child or parent when there is a risk of a sore mouth (oral mucositis) as a result of chemo- and/or radiotherapy -closed for inclusion

NEMO Project  Clinical study of predicting daily functioning of children with cancer based on changes in their cognition/behavior - closed for inclusion

No place like home….  Focus group study to explore the wishes and needs of parents and children >12 years to receive part of their oncological treatment at home - closed for inclusion

RM-493-040 setmelanotide (Acquired Hypothalamic Obesity)  Clinical study of treatment with setmelanotide in patients with Acquired Hypothalamic Obesity - closed for inclusion