What is the NF Registry?


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.


Who created the NF Registry?

The NF Registry was created in 2012 by the Children’s Tumor Foundation (CTF), a nonprofit organization. It is administered by OpenApp, which also maintains over 20 other registries. Both the Foundation and OpenApp are committed to maintaining the highest standards of data security and confidentiality.


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

The NF Registry, through its parent body CTF, will review as many NF clinical trials or research studies as possible. If a trial or study is seeking volunteers, the NF Registry will search among the people who have volunteered to be contacted to find those appropriate for the specific study. When they find a match, the Registry will provide information about the study and how to contact the researchers. We will not give your information directly to the researchers. And please remember to ask your doctor about whether the trial is suitable for you.


What happens to my data?

  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 to identify those who may be eligible for clinical trials.
  3. It will be summarized along with data from other Registry participants to let people see the “big picture” of the group as a whole by viewing Registry charts and graphs.


Who can use the NF Registry

The NF Registry is for anyone involved with NF who is interested in contributing to research efforts. Whether you are new to research or have already been involved in clinical trials, the Registry needs you.

Children under age 18 can be registered by a parent or guardian. The adult is the contact point for all communications from the Registry.

Adults over age 18 can register themselves. However, if a person over 18 requires assistance, the parent can register on behalf of their child. Other than in this situation, an adult should not register another adult.


Why are annual updates important?

Yearly, we will contact you by email and ask you to review and update your medical survey. This is important both so that we can notify you of clinical trials that fit your current symptoms. We also hope to build a picture of how the disorder changes over time. To put it simply, updating your account makes the Registry more useful.


How can I connect to other people who have NF?

See the CTF website for information about state and local events www.ctf.org/events/calendar . Visit our CTF Facebook page at www.facebook.com/childrenstumor. Additionally, CTF hosts an annual patient forum, which bring 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 clinical trials?

Permission to contact you and to use your anonymous data will not end unless you act to cancel it. You may cancel your participation at any time by contacting nfregistry@ctf.org