In 2012, the Children’s Tumor Foundation created an online NF Registry. The purpose of this registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of neurofibromatosis (NF), and to determine the commonality of specific NF characteristics.
This past April, the NF Registry proved useful in finding patients for a specific study. David Stevenson, MD, of the University of Utah, is enrolling patients who have had tibial bowing, but never a tibial fracture. Tibial bowing is a rare, but serious, complication of NF1 in which improper growth of the tibial bone of the lower leg leads to bowing and a tendency to fracture.
In just a few clicks, the NF Registry created a list of 50 patients who fit the study requirements. These patients were then sent an email describing the study and giving contact information for Dr. Stevenson. Of those who received the email, about 35% opened it and a handful contacted the researcher. While a 35% response rate is fairly typical of what you can expect, it highlights why we need to increase the number of people in the NF Registry.
Please visit www.nfregistry.org for more information, or contact Pamela Knight, Children’s Tumor Foundation Clinical Program Manager, at 212-344-6633, ext. 8555 or pknight@ctf.org.
