Clinical trial · Observational
HRQL and Symptom Assessment for Patients With DIPG or Recurrent and Re-irradiated Brain Tumours and Their Caregivers
Health Related Quality of Life (HRQL) and Symptom Assessment in Patients Diagnosed With Diffuse Intrinsic Pontine Glioma (DIPG) or Recurrent and Re-irradiated Brain Tumours and Their Caregivers: A Non-Therapeutic Study
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
Although many children with brain tumours are successfully cured of their disease, a substantial proportion of patients suffer disease recurrence and require further treatment. This therapy may involve a repeat course of radiation (RT2). Based on retrospective data, re-irradiation may provide palliative and even potentially curative benefit. However, such retrospective data are subject to bias, which may over-report survival and under-report toxicity. Furthermore, we do not know how re-irradiation affects patients' HRQOL. The goal of this research is to prospectively describe the HRQOL of patients diagnosed with DIPG and recurrent brain tumors and their families before and after re-irradiation to more accurately assess the benefit versus the toxicity of this treatment. In addition, if we are able to demonstrate the feasibility of collecting HRQOL information on a routine basis we will be able to justify the need to conduct this research further and implement HRQOL screening as a standard of care for these patients. Re-irradiation for children with DIPG and recurrent brain tumours will not cure these children from their disease but may improve neurological function and wellbeing. We postulate that the opportunity of more time to say the final good bye and creating memories will facilitate bereavement and prevent psychological dysfunction of parents and siblings. A greater understanding of what helps these families may enable clinicians to better support these children and their families in this difficult disease course. Ultimately our goal is to improve the psychological experience of these patients and their families.
Conditions
Conditions (6)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Brain Tumor, DIPG | Brain Neoplasm | ALIAS | 0.85 |
| Brain Tumor, Pediatric | Childhood Brain Neoplasm | ALIAS | 0.90 |
| Brain Tumor, Pediatric, Recurrent | Brain Neoplasm | ALIAS | 0.85 |
| DIPG | Diffuse Intrinsic Pontine Glioma | ALIAS | 0.90 |
| Radiation Exposure | — | UNRESOLVED | — |
| Radiation Toxicity | — | UNRESOLVED | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| This study does not include an intervention. | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (2)
- label
- Patient/Caregiver dyad diagnosed with DIPG
- description
- All of these criteria must be met for a patient to be eligible for this study: 1. Patient aged \>2 and \<21 years treated with a repeat course of radiation for DIPG 2. Radiation for the first tumour must be a primary brain neoplasm (i.e. not leukemia). 3. Enrollment within 14 days of starting re-irradiation (RT2). 4. Patients with malignant transformation of the first tumour are eligible. 5. There are no restrictions on histology or RT1/RT2 dose-fractionation or RT2 body site. In other words, RT2 may be directed at a different location to RT1. 6. The patient is treated at a site where the study is approved by the local ethics board 7. Consent, and, if applicable, assent, has been obtained according to institutional standards
- interventionNames
- Other: This study does not include an intervention.
- label
- Patient/Caregiver dyad with re-RT for a recurrent brain tumour
- description
- All of these criteria must be met for a patient to be eligible for this study: 1. Patient aged \>2 and \<21 years treated with a repeat course of radiation for a recurrent or progressive brain tumour (stratum 2). 2. Radiation for the first tumour must be a primary brain neoplasm (i.e. not leukemia). 3. Enrollment within 14 days of starting re-irradiation (RT2). 4. Patients with malignant transformation of the first tumour are eligible. 5. There are no restrictions on histology or RT1/RT2 dose-fractionation or RT2 body site. In other words, RT2 may be directed at a different location to RT1. 6. The patient is treated at a site where the study is approved by the local ethics board 7. Consent, and, if applicable, assent, has been obtained according to institutional standards
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 2 Years
- Maximum age
- 21 Years
Show eligibility criteria text
Inclusion Criteria: 1. Patient aged \>2 and \<21 years treated with a repeat course of radiation for DIPG or other recurrent or progressive brain tumour. 2. Radiation for the first tumour must be a primary brain neoplasm (i.e. not leukemia). 3. Enrollment within 14 days of starting re-irradiation (RT2). 4. Patients with malignant transformation of the first tumour are eligible. 5. There are no restrictions on histology or RT1/RT2 dose-fractionation or RT2 body site. In other words, RT2 may be directed at a different location to RT1. 6. The patient is treated at a site where the study is approved by the local ethics board 7. Consent, and, if applicable, assent, has been obtained according to institutional standards Exclusion Criteria: 1\. Inability to complete questionnaires in English or French.
References
Publications (0)
Data not yet available