NF2 Natural History Study at the National Institutes of Health

Author: John and Linda Manth

Published On: 12/09/2021

The National Institutes of Health (NIH) is the taxpayer funded federal agency responsible for medical research. The benefit of their research is returned to taxpayers. NIH has a long history of conducting research in NF1 and NF2.  Fifteen years ago, when my then 7-year-old daughter Leah was newly diagnosed with NF2, I was looking for experts in NF2 to give opinions on what treatments and surgeries Leah may need. This led me to conduct a search in clinicaltrials.gov, and I came across the NF2 Natural History Study at NIH.  Leah applied to the study, was accepted and we embarked on a 5-year journey, traveling to Bethesda, MD twice a year.  The study included MRI’s, lab work, audiology testing, vestibular testing, and consultations with several specialists, all knowledgeable about NF2.  The primary investigator at that time was Dr. Ashok Asthagiri.  He was an amazing person and physician who spent time explaining what we had to immediately deal with, as well as what the future may hold.  We found the entire experience to be extremely worthwhile and beneficial.

One of the highlights of our experience was staying at the Children’s Inn.  The Children’s Inn is a non-profit located within steps of the Clinical Center, but feels like it is miles away from anything clinically related.  It is an oasis for children and their families who are receiving medical care are NIH.  Families can stay there for free and experience the wonderful therapeutic environment. There are many social and recreational activities for all ages, as well as support.  Its is an amazing place where we could forget about our long days of testing and doctor’s visits.

When Leah was part of the original five-year study, participants travelled to NIH every six months for about 3-4 days.  Both our family and our medical insurance company were appreciative that there were no costs associated with the care received at NIH.  Even though we were getting great advice at NIH, we also continued relationships with our local medical team in Buffalo, NY as well as Leah’s NF2 team in Boston, NA. When Dr. Asthagiri left NIH, the NF2 Natural History ended shortly after.  They allowed everyone to complete their five-year obligation, but did not enroll any new participants. 

Recently, NIH initiated a revised prospective Natural History Study for NF2. This time around the obligation is to travel only once a year to Bethesda, MD.  NF2 patients ages 8-75 are eligible to enroll.  All travel, lodging, food and medical testing is provided at no cost to those enrolled.  This is a great opportunity for NF2 patients who are looking for expert NF2 advice, a second opinion regarding treatment of their NF2, or someone who wants to give back and be part of a much needed Natural History Study.  For more information or to enroll in the study, contact Gretchen C. Scott, RN, at nf2@nih.gov or Dr. Prashant Chittiboina, MD at 301-496-2921 or prashant.chittiboina@nih.gov.

Anyone considering participating in a clinical trial or research study should discuss the matter with his or her physician. The NF Network does not endorse or recommend any particular studies. If you or a loved one is interested in participating in NF research, please read our clinical trials brochure to learn more about the clinical trial process and what that entails.