Neoplasms

All Conditions

Nervous System Diseases

Skin and Connective Tissue Diseases

Rare Diseases

Glioma

Brain Neoplasms

Central Nervous System Neoplasms

Pinealoma

Ependymoma

Solitary Fibrous Tumors

Hemangiopericytoma

Hemangioblastoma

Choroid Plexus Neoplasms

Neoplasms, Fibrous Tissue

Neoplasms, Neuroepithelial

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Germ Cell and Embryonal

Neoplasms by Histologic Type

Neoplasms, Glandular and Epithelial

Neoplasms, Nerve Tissue

Nervous System Neoplasms

Brain Diseases

Central Nervous System Diseases

Cerebral Ventricle Neoplasms

Neoplasms, Vascular Tissue

Neoplasms, Connective Tissue

Neoplasms, Connective and Soft Tissue

Hemangioma

Hemangioma, Capillary

Germ Cells Tumors

Pineocytoma

Neuroepithelioma

The goal is to determine whether the new 2021 WHO classification, based on cIMPACT-NOW recommendations, results in more homogeneous patient groups than the old 2016 classification. Furthermore, it will help derive provisional guidelines on how patients with these newly defined tumour entities are best treated. These recommendations will be based on the experience of EORTC investigators with chosen treatments and their experience as reported in this data collection report.

Observational

EORTC HQ

Jordi Bruna Escuder

Michael Weller

Every new classification depends on its prognostic power and on the type of treatment given. With the rapid evolution of diagnostic methods and the advance in new treatments, there is much less reliable information available on how patients with newly defined brain tumour entities should be treated and what to expect from the current treatments.

The goal is to determine whether the new 2021 WHO classification, based on cIMPACT-NOW recommendations, results in more homogeneous patient groups than the old 2016 classification. Furthermore, it will help derive provisional guidelines on how patients with these newly defined tumour entities are best treated. These recommendations will be based on the experience of EORTC investigators with chosen treatments and their experience as reported in this data collection report.

* Tumour tissue specifically stored for the purpose of this project
* Residual biological material ("leftovers") and/or derivatives

Observational Study for Assessing Treatment and Outcome of Patients With Primary Brain Tumours Using cIMPACT-NOW and 2021 WHO Classification

Observational Study for Assessing Treatment and Outcome of Patients With Primary Brain Tumours Diagnosed According to cIMPACT-NOW Recommendations and the 2021 WHO Classification

Date of surgery that allowed for the first pathological diagnosis up to the date of death (any cause). Patients will be followed up for 5 years after enrolment.

From the date of start of the anti-tumor therapy until the date of first objective progression as determined by the local investigator or the date of patient's death whichever occurs first. Patients will be followed up for 5 years after enrolment.

Recorded from the date start of an anti-tumor therapy until disease progression or start of a new anti-tumor therapy. Patients will be followed up for 5 years after enrolment.

European Organisation for Research and Treatment of Cancer - EORTC

Blood and Lymph Conditions

Immune System Diseases

Lymphoma

Sarcoma, Ewing

Neuroectodermal Tumors, Primitive, Peripheral

Astrocytoma

Lymphosarcoma

Primary Central Nervous System Lymphoma

Katherine E Warren, M.D.

Background:

- An important new area of brain tumor research is the development of tumor and brain stem cell lines. Successful growth of these cell lines requires obtaining large volumes of fresh tumor and brain tissue, which is best accomplished by harvesting whole brains from recently deceased patients. These cell lines will help researchers understand how these tumors develop and will also help identify new targets for treatment. Researchers are interested in conducting a pilot study of planned inpatient hospice care with timely brain tumor tissue harvest at the time of death.

Objectives:

* To provide high-quality end of life inpatient hospice care for patients with untreatable brain tumors.
* To procure brain and tumor tissue shortly after time of death in order to derive viable tumor and neural stem cell lines for research purposes.

Eligibility:

* Individuals at least 18 years of age who have an untreatable primary brain or central nervous system tumor, are able to give informed consent (either their own or through a designated power of attorney), and have agreed to a Do Not Resuscitate order and Consent for Autopsy as part of the end-of-life care plan.
* HIV-positive individuals or those suspected of having infectious cerebritis are not eligible because of the potential for contamination of brain tissue.

Design:

* Participants will be enrolled in inpatient hospice admission to the National Institutes of Health Clinical Center either from home or from an outside hospital once a study investigator estimates an expected survival of less than 2 weeks.
* Participants will receive palliative care at the Clinical Center. Care will be tailored to each participant depending on the information provided in the individual's end-of-life care plan.
* Supportive medications such as antiseizure medications and pain relievers will be administered as appropriate.
* At the time of death, researchers will follow standard procedures for notifying next of kin and will collect brain tissue and tumor samples from the deceased.
* Following tissue collection, the deceased will be released for autopsy and funeral procedures.

BACKGROUND:

- Patients treated by the Neuro-Oncology Branch (NOB) for their brain tumors unfortunately and commonly succumb to their disease. They and their loved ones often seek a way of adding meaning and utility to their death by agreeing to donate brain tumor tissue for laboratory research that may serve the medical community, and ultimately other patients, through better understanding of these rare diseases. Important new avenues of brain tumor research includes the molecular characterization of tumor tissue, and the development of tumor and neural stem cell lines. Successful growth of these cell lines requires acquisition of large volumes of fresh tumor and brain tissue that can best be accomplished by harvesting whole brains from recently deceased patients. In an effort to provide high quality end of life care, with the additional intent of facilitating efficient donation of brain tumor tissue at the time of death, we are conducting a pilot study of planned inpatient hospice care incorporating timely brain tumor tissue procurement at the time of expiration.

OBJECTIVES:

* Provide high quality end of life inpatient hospice care for patients dying with untreatable brain tumors.
* Procure brain and tumor tissue shortly after time of death in order to derive viable tumor and neural stem cell lines for research purposes.

ELIGIBILITY:

- Adult patients with primary brain tumors.

DESIGN:

- This is a pilot study to assess feasibility of procuring viable brain and tumor tissue proximal to the time of death. Target accrual is 10 patients for brain harvest.

A Pilot Study of Inpatient Hospice With Procurement of Brain Tumor Tissue on Expiration for Research Purposes

National Cancer Institute (NCI)

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Observational Study for Assessing Treatment and Outcome of Patients With Primary Brain Tumours Using cIMPACT-NOW and 2021 WHO Classification	NCT05259605	Glioma Glioneuronal Tu... Choroid Plexus ... Pineal Tumors Germ Cell Tumor Tumor of the Se... Diffuse Midline... Ependymoma Embryonal Tumor Pineal Tumor Hemangiopericyt... Hemangioblastom... Melanocytic Tum...	Observational	18 Years -	European Organisation for Research and Treatment of Cancer - EORTC
A Pilot Study of Inpatient Hospice With Procurement of Brain Tumor Tissue on Expiration for Research Purposes	NCT01251913	Ependymomas Gliomas PNET Pineal Tumors PCNSL (Primary ...		18 Years - 100 Years	National Institutes of Health Clinical Center (CC)
A Pilot Study of Inpatient Hospice With Procurement of Brain Tumor Tissue on Expiration for Research Purposes	NCT01251913	Ependymomas Gliomas PNET Pineal Tumors PCNSL (Primary ...		18 Years - 100 Years	National Institutes of Health Clinical Center (CC)
Observational Study for Assessing Treatment and Outcome of Patients With Primary Brain Tumours Using cIMPACT-NOW and 2021 WHO Classification	NCT05259605	Glioma Glioneuronal Tu... Choroid Plexus ... Pineal Tumors Germ Cell Tumor Tumor of the Se... Diffuse Midline... Ependymoma Embryonal Tumor Pineal Tumor Hemangiopericyt... Hemangioblastom... Melanocytic Tum...	Observational	18 Years -	European Organisation for Research and Treatment of Cancer - EORTC

Spots Global Cancer Trial Database for pineal tumors