Frequently Asked Questions
NF Registry
Frequently Asked Questions
Thank you for your interest in the NF Registry. Please see below some frequently asked questions. If you have additional questions not listed here, please contact us at nfregistry@ctf.org!
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 participate in research. It is a way to better understand the “natural history” of the disorder and why the symptoms of NF can vary so much from person to person. It also lets patients see the “big picture” of the group by viewing NF Registry charts and graphs. All information is confidential, and no names are attached to these 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 NF 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 NF 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.
Who created the NF Registry?
The NF Registry was created in 2012 by the Children’s Tumor Foundation (CTF), an organization singularly focused on bringing treatments to NF patients.
What if I answer “yes” to being contacted about clinical trials or research studies?
The NF Registry, through 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. Please remember to ask your doctor about whether the trial is suitable for you.
What will you do with my information?
The NF Registry’s first principle is that patients are always in control of their own information. All information is carefully protected by the strictest privacy protocols. Information in the NF Registry is used for only two purposes:
- Communicating with you about news and clinical trials that match your needs
- Providing qualified researchers with participant data for research purposes approved by the NF Registry Advisory Board. Whenever possible, any data shared with researchers will be de-identified. De-identification means your name, all dates and your address will be removed from the data, and only a randomly assigned identification code will be included.
In cases where more identifiers are necessary to the requestor’s study, the Advisory Board may choose to release this data. This type of data will only be shared under conditions where absolutely necessary to the goal of the research. The IRB will determine the need for additional consent.
What happens to my data?
It will be summarized along with data from other NF Registry participants and used in the following ways:
- So that NF researchers can understand how common specific NF characteristics are and what treatments are being used.
- To identify individuals who may be eligible for clinical trials.
- To help people see the “big picture” of the group as a whole by viewing Registry charts and graphs.
How private is private?
Your NF history is very personal and important to you. The NF Registry protects you by using the highest standards for data security and ethical use (North Star Review Board). When filling out the surveys, you are free to answer (or not answer) the questions at your personal comfort level.
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 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 surveys makes the Registry data more useful.
If I forget to update my information, will I stop receiving information about 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.
Can I choose to stop participating in the NF Registry?
You may revoke (cancel) your consent at anytime. This means that the registry will no longer contact you and that you will not be asked to submit new information. However, researchers may continue to use data that has already been shared by the registry and the registry may continue to share data that you provided before you withdrew.
To withdraw, log in to your account and select your name and the NF Registry. Then, click the button labeled ‘Consent/Opt-ins’ followed by the button that says ‘Revoke’. You may also withdraw by contacting the registry staff directly by e-mail or phone at: nfregistry@ctf.org or 646-738-8567.
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 summit, which brings together members of the NF community in a friendly and informative setting.
How do we know the NF Registry is working? Has it had results?
Yes, absolutely! In addition to connecting NF patients with specific research studies and clinical trials, NF Registry studies have provided critical information about the availability and types of NF care to patients, especially for adults with NF. This is helping doctors and researchers better plan for future care and treatment options for patients with all forms of NF. Increased knowledge about specific manifestations of NF is also helping researchers improve treatment considerations, and patients are reporting back improved lifestyles. For example, an adult NF2-SWN patient maintained his hearing because of the chance to use a specific drug, and the parent of an NF1 patient was given a more comprehensive range of treatment possibilities for her young child. Click here to learn more about the role the NF Registry has played in advancing research.
Will I start getting emails from the Children’s Tumor Foundation?
By signing consent, you are agreeing to hear from the Children’s Tumor Foundation about the registry itself. You may opt in to hear about other information not related to the registry, but this is not required. Your contact information is not shared with any other organization, and it will never be used for fundraising or marketing without permission.
Who should I contact if I have questions?
For questions about the NF Registry, please email nfregistry@ctf.org.