Frequently Asked Questions

What is the NF Registry?

The NF Registry is an attempt to create the largest worldwide database of individuals with NF so that together we can speed the development of promising new treatments. The NF Registry seeks to match patients with trials and make it easier for people living with NF to find opportunities to get involved with research. It is a way to better understand the "natural history" of the disorder, and why the symptoms of NF can be so different from person to person. It also lets patients see the "big picture" of the group as a whole by viewing Registry charts and graphs. All information is confidential and no names are attached to these charts and graphs.

Why was the NF Registry created?

Millions of people worldwide live with NF, not to mention relatives, friends and supporters, so there are an abundant number of potential volunteers that may wish to contribute to research. But even the most motivated individuals have told us that they have trouble finding the right opportunities to get involved. They face challenges finding trials that need people with their specific medical history, or in their geographic area.

At the same time, even at the country’s most sophisticated medical centers, trial teams struggle to recruit volunteers on time so that their trials can move forward. This slows the drug development process and makes trials more expensive. It is estimated that recruiting challenges ultimately account for one quarter of the total cost of clinical research — and this impacts drug company's willingness to fund trials. 

The NF Registry was created to help increase the flow of participants into the clinical trials that need them, speeding progress toward breakthrough therapies and an end to NF. 

Who created the NF Registry?

The NF Registry was created in 2012 by the Children’s Tumor Foundation. It is administered by Patient Crossroads, which also maintains 250 other rare disease registries. Both the Foundation and Patient Crossroads are committed to maintaining the highest standards of data security and confidentiality. 

I have heard that both the Children’s Tumor Foundation and Washington University have NF registries. What are the major differences between the two registries?

The Children’s Tumor Foundation (CTF) NF Registry is a patient-driven tool designed to speed recruitment for clinical trials. It includes all NF patients, including those with NF1, NF2, and schwannomatosis. This Registry will review as many actively recruiting NF clinical trials or clinical research studies as possible. Using information entered into the database by the patient or his or her parent, the NF Registry will seek to match patients with the trials most suitable for them. When a match is identified, the NF Registry, through CTF, will provide people who have agreed to be contacted with information about the study and how to contact the researchers.

The Washington University NF1 Patient Registry Initiative (NPRI) is an internet-based database that collects medical information from individuals with NF1 to help physicians and researchers better understand cancer risk and other health outcomes in children and adults with NF1. The information gained from these studies may help clinicians to develop personalized treatment strategies that improve the quality of life for individuals living with NF1.

What if I answer “yes” to being contacted about clinical trials or research studies?

The NF Registry, through its parent body the Children’s Tumor Foundation, will review as many NF clinical trials or research studies as possible. If the trial or study is seeking volunteers, the NF Registry, through CTF, will search among the people who have volunteered to be contacted to find someone appropriate for the specific study. When they find a match, the NF Registry, through CTF, will provide people who have agreed to be contacted with information about the study and how to contact the researchers. The control is in the hand of the volunteer. We will not give your information directly to the researcher. You are the person who will explore options, ask questions, and decide whether to pursue the study.

Participating in the NF Registry does not mean that you will qualify for participating in a clinical trial or research study. However, it does mean you are increasing the likelihood of finding a pool of people who are needed to advance research.

What happens to my data?

All data you provide to the NF Registry is maintained in a database protected by industry-standard security protocols. The information you provide as a volunteer is never publicly linked to your name or personal identifying details. Only the NF registry, a project of CTF, will have access to your information. CTF will not use your data for marketing or for the parent organization itself. Rather, your information will be used in two ways:

  1. It will be summarized along with data from other registry participants so that NF researchers can understand how common specific NF characteristics are and what treatments are being used.
  2. It will be summarized along with data from other registry participants in order to identify patients who may be suitable for clinical trials.
  3. It will be summarized along with data from other registry participants to let patients see the "big picture" of the group as a whole by viewing Registry charts and graphs. Participants can click on "Registry Data" to view these items.

Who can use the NF Registry?

The NF Registry is for anyone involved with NF who is interested in contributing to NF research efforts. Whether you are new to research or you have already participated in trials, the NF Registry makes it easier for researchers to find individuals to participate in trials.

The NF Registry is a tool for CTF to identify patients who may be eligible to participate in clinical trials or research studies. CTF does this by using the information you have provided about your NF and determining if it matches entry criteria for studies that have been provided to CTF by institutions conducting the studies. In addition, clinical trial teams who are registered with CTF may use the information provided by NF Registry participants to determine the numbers of patients who may be eligible for recruitment into their studies. If it looks like you may be a potential candidate for a study, you will be contacted by CTF and given information that we have regarding the study, and then it is entirely up to you, the volunteer, to get in touch with the sites conducting the research, if you are interested in a study.

Whether you are curious about getting involved in clinical research or are a clinical trial team member who needs volunteers, the NF Registry is for you. We can’t do our work without you.  Act now to begin building your profile and become an NF pioneer in a group of highly motivated volunteers.

How do I report issues I am experiencing with the NF Registry, or ask questions?

The NF Registry was designed to be a friendly, easily navigable tool that anticipates our users’ needs. Please let us know how we can better serve you. If you are experiencing difficulties or have suggestions on how to improve the system, feel free to tell us. We will respond to you as soon as possible and do our best to resolve any issues you encounter. Simply This email address is being protected from spambots. You need JavaScript enabled to view it. to send us an email.

Why are annual updates important?

Yearly, the NF Registry will contact you by email and ask you to review and update your information in our database. We will do this so that we have the most up-to-date information available for clinical trials. We also do this so that researchers can better understand the changes over time of NF in larger numbers of patients than they’ve ever been able to study before.

How can I connect to other people who have NF?

The Children’s Tumor Foundation provides several outlets for those with NF to connect with each other.  Visit the chatroom and state chapter pages on the www.ctf.org website, or visit the CTF facebook page at www.facebook.com/childrenstmrfdn.  Additionally, CTF hosts the NF Forum annually, which brings together members of the NF community in a friendly and informative setting.

If I forget to update my information, will I not be considered for trials?

Permission to contact you and use of your registry data will not end unless you cancel it – so you will still be considered, although it is likely that researchers will be interested in up-to-date information. If you don’t want to be considered for trials, you may cancel your participation by contacting Pamela Knight at This email address is being protected from spambots. You need JavaScript enabled to view it., or at the address below.

Pamela Knight, Clinical Program Director
Children’s Tumor Foundation
120 Wall St., 16th Floor
New York, NY 10005
212-344-6633, ext. 8555