The NIH wants to Help
The National Institute of Health (NIH) has opened a longterm Natural History Study to better understand HLRCC. Enrolled participants have the opportunity to receive expert opinion from physician scientists who are experts in HLRCC (virtual or in person) and receive cost defrayed care for the disorder.
Seek Expert Consultation
Dr. Linehan pioneered the study of the genetic basis of kidney cancer. His team identified the genes for the common forms of kidney cancer and described the pathways of these kidney cancer genes. Dr. Linehan and his team at the NIH National Cancer Institute have been studying HLRCC since May, 1989.
“We plan on the HLRCC study to continue indefinitely. We have came a long way since 1989 and have learned so much from the brave individuals affected with this disorder over the years. We have developed an approach for surveillance, a surgical management approach for renal turmors, and an approach to therapy for patients with advanced disease. However, we still have many, many important things to do and accomplish in order to help improve the lives of the wonderful people affected with this disorder and we are not going to stop.”
– Dr. Marston Linehan
How to Enroll
To enroll in the Natural History Study on HLRCC please contact Deborah Nielsen using the contact information listed below and cc Dr. Linehan to your email.
To seek consultation with the NIH outside of the Natural History Study on HLRCC please reach out to Dr. Linehan regarding your case with the below contact information. Consultation may be in regards to MRI/CT imaging findings as well as surgical and medical management of HLRCC.
Contact:
Deborah A Nielsen, R.N. (240) 760-624, Email: deborah.nielsen@nih.gov
Lidenys O’brien, (240) 551-4343, Email: obrienlic@nih.gov
Marston Linehan, M.D. Email: WML@nih.gov
Stefania Misul (Contractor)
For more information on the trial please visit Natural History Study on HLRCC