Natural History of and Specimen Banking for People With Tumors of the Central Nervous System

Background:

This protocol is designed to meet an unmet need in neuro-oncology by evaluating patients

with CNS tumors throughout their disease course. Data may be collected from multiple

sources including medical records tests, and objective and subjective measures in

patients and their caregivers. The protocol will evaluate patients with tumors of the

central nervous system (CNS) who appear to be probable candidates for future protocol

entry, have disease manifestations that are of unique scientific interest, importance,

and/or educational value, or who have understudied tumors with unknown or unclear natural

history. Patients with known genetic syndromes at high risk of developing CNS cancers

will also be evaluated.

Objectives:

- To evaluate patients with tumors of the central nervous system (CNS) who are

probable future candidates for NCI Phase I and II protocols.

- To follow patients with tumors of the CNS that are representative of important

scientific and/or clinical principles

- To follow patients with CNS tumors that are understudied or have indeterminate

natural history

- To evaluate and follow patients with known genetic syndromes at high risk of

developing CNS cancers

Eligibility:

- All patients greater than or equal to 18 years of age with tumors of the CNS (or a

history of tumors of the CNS) of interest to the NOB, who may be candidates for an

NOB trial at some point in the future.

- Patients with tumors of the CNS that are of particular interest to members of the

NOB because they pose important clinical and/or scientific questions and/or shed

light on important aspects of the disease.

- Patients with known genetic syndromes at high risk of developing CNS cancers are

eligible.

- Patients with rare tumors of the CNS who offer an important educational benefit to

neuro-oncology trainees and staff.

- Caregivers, as identified by the patient are important to assess internal and

external resources (e.g., coping mechanisms), identify specific factors that help

patients with primary brain tumors face the uncertainty in their daily lives.

- Ability of patient or Legally Authorized Representative (LAR) to understand and the

willingness to sign a written informed consent document.

Design:

- All patients will undergo an initial evaluation by a member of the NOB or by a

health care provider participating in the patient s care, where past medical and

oncologic histories will be obtained as well as relevant data such as neuroimaging

and pathology review. A total of 10,000 participants will be accrued to this study.

- Caregivers will be defined as anyone who patients identify as an unpaid close friend

or family member who knows the NHS participant well and who is involved with their

day-to-day care.

- Patients may be seen at the NIH Clinical Center at varying intervals depending on

the clinical situation. Data related to the natural history of their disease course

and outcome will be collected at least every visit at the NIH Clinical Center in

which imaging is reviewed. Patients will be seen at a clinic visit or followed

remotely at a minimum of once every year.