NCI-CONNECT Rare Brain & Spine Tumor Network
 

Referrals

Nurses and doctors in the clinic
Credit: NCI-CONNECT Staff

The diagnosis of a rare brain or spinal cord tumor can be overwhelming and patients may feel it is urgent to get started with their care. Patients are encouraged to seek a second opinion for care and treatment options from a doctor who has experience treating their brain or spine tumor.

The NCI’s Center for Cancer Research, Neuro-Oncology Branch at NIH in Bethesda, Maryland, has doctors and nurses with extensive experience treating rare brain and spinal cord tumors. Patients can visit our Neuro-Oncology Branch Clinic for an evaluation or consultation with our healthcare providers. Consultations for patients with rare brain and spine tumors are free-of-charge.

Our Neuro-Oncology Branch healthcare team provides patients with a comprehensive care plan that, together with their physician at home, will ensure they get the best treatment possible.

Referral Information

To make an appointment or refer a patient, contact us at:

NCINOBReferrals@mail.nih.gov or call 1-866-251-9686 or 240-760-6010 

(Monday to Friday, 9:00 a.m.–5:00 p.m. ET)

We request that the patient or family member contact us directly to facilitate the consent process for the visit. Please do not send medical records when requesting an appointment. Our patient care coordinators will provide instructions.  

Candidates with one of these rare CNS tumors should participate if:

  • they are newly diagnosed or have a recurrence and need to make a treatment decision
  • they are interested in a second opinion on follow-up care
  • they are interested in improving their care and the care of future patients

What are the costs?

  • Consultations are free-of-charge.
  • Treatments, tests and other services at NIH are also free after a patient is accepted on study.
  • NIH does not cover expenses for medical services at other facilities.

What items are needed for a consultation?

  • All available MRI and CT scans related to the brain or spine tumor diagnosis and corresponding radiology reports. Most recent MRI should be within 30 days of the appointment.
  • Pathology material from the most recent surgery (including biopsies) sent in advance of the appointment. Receiving this material is critical to schedule the appointment. Appointments can be scheduled as early as two weeks after the pathology material is received. 
  • Most recent progress note from the patient’s treating physician. Other records, including surgery, radiation, and treatment summaries may be requested to determine trial eligibility.

View or download the referral flyer

Patients referred to the NIH will have the option to participate in a clinical trial at NCI or a Brain Tumor Trials Collaborative (BTTC) center. The BTTC is a network of renowned medical centers throughout the United States that works with NCI-CONNECT to provide clinical trials to patients with rare CNS tumors. This allows patients to access cutting-edge therapies at a center closer to their home.

If patients cannot travel for an appointment, they can still participate in our online Outcomes and Risk Study from home. Participating will help advance our knowledge of rare brain and spine tumors.

NCI-CONNECT Clinic

The NCI-CONNECT Clinic brings together adult patients with the same rare brain or spine tumor and their caregivers to receive special services. Learn more about joining the clinic and the services offered.

  • Updated: March 5, 2019