About the NF Registry
The NF Registry is a patient-centered database that allows those living with any form of NF to contribute to research and stay up-to-date on studies of potential treatments. Participating is safe, easy, and secure and everything can be done online at www.nfregistry.org. By joining the Registry, patients (or their parents) can actively participate in the search for better treatments. The Registry now has over 7,000 participants, but needs your help to continue to grow and make a greater impact on on the well-being of individuals living with NF.
How it Helps
The NF Registry benefits NF patients, biotech industry experts, doctors, and researchers in the field of NF. As the NF Registry grows with more patients, so do the benefits for all involved, as we work together toward the goal of connecting patients with clinical trials. The NF Registry incentivizes pharmaceutical and biotech industries to invest in NF by providing data and assisting in the recruitment of patients. It makes anonymized data available to educate patients and caregivers, and to research trends throughout the broader NF community.
Benefits for You
Once you complete a Registry questionnaire about symptoms, you can print out your answers to keep as a record of your own (or your child's) NF history. Plus, you will be able to see an anonymous summary of other NF Registry members' responses, so you can tell how your experience compares with theirs.
Your NF history is very personal and very important to you, and the NF Registry is committed to protecting your privacy. PatientCrossroads, which stores the information, uses the highest standards for data security. Your name, contact data, and identifying information are kept separate from the medical data: only you and the NF Registry administrators can see it. The NF Registry will only contact you if you give permission and it is never used for fundraising. You can withdraw from the NF Registry any time you want by sending written notice to the NF Registry program manager at the Children’s Tumor Foundation, at which point the NF Registry will stop contacting you about clinical trials or updating your information.
Clinical Trials and Research
If you say we can contact you about clinical trials or research programs, we will let you know when there is an opportunity for you or your child to participate in a study. You can then contact the researchers if you wish to participate—they will not get your personal information and will not be able to contact you. The NF Registry will not contact you about all clinical trials. We will reach out only if your questionnaire indicates that you are likely to qualify for a particular study. You can also use the NF Registry at any time to find information about all current studies. To learn more about what clinical trials are and factors to consider before participating, click HERE.
Frequently Asked Questions
Why was the NF Registry created?
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. Millions of people worldwide live with NF, so there is 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 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 manages the NF Registry?
The NF Registry was created in 2012 by the Children’s Tumor Foundation. It is administered by PatientCrossroads, which also maintains 250 other rare disease registries. Both the Foundation and PatientCrossroads are committed to maintaining the highest standards of data security and confidentiality.
Who can use the NF Registry?
The NF Registry is for anyone with NF1, NF2, or schwannomatosis 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 and patients to match up with one another. It does this by using the information you have provided about your NF, and determining if it matches entry criteria for studies. In addition, clinical trial teams who are approved by our Clinical Care Advisory Board may use the information provided by NF Registry participants to determine the numbers of patients who may be eligible for recruitment into their studies. You will be contacted by CTF and given information that we have regarding the study, and it is entirely up to you, the volunteer, to get in touch with the sites conducting the researchers, if you are interested in a study.
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 three 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.
How else might my data be used?
The NF Registry strips out all identifying information to give researchers anonymous medical information about how NF starts and progresses. This information could, for example, help doctors understand the connections between specific gene mutations, different sets of NF symptoms, different patterns of NF development, and responses to treatments.
How private is private?
Your NF history is very personal and very important to you. The NF Registry protects your privacy. Patient Crossroads, which stores the information, uses the highest standards for data security. Your name, contact data, and identifying information are kept separate from the medical data. Only you and the NF Registry administrators can see it. The NF Registry will only contact you if you give permission and your information is never used for fundraising.
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.
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.
How do I report issues I am experiencing with the NF Registry, or ask questions?
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 will do our best to resolve any issues you encounter. Simply email email@example.com for assistance.
Why are annual updates important?
Yearly, the NF Registry will contact you by email and ask you to review and update your information in the database. This is important so that the most up-to-date information is available for clinical trials. In addition, with annual updates researchers can better understand how NF changes over time, and based on a larger number of patients than ever before.
If I forget to update my information, will I still be considered for clinical 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 the NF Registry program or emailing firstname.lastname@example.org.
Joining the NF Registry is quick and easy. Click the link below to visit the NF Registry website and create your private acount.
The NF Registry will then ask some questions about the person with neurofibromatosis. The questionnaire should take less than 30 minutes to fill out. You don't have to answer all of the questions, and you can stop at any time and return to it later. The information includes basic data - name, contact information, age, gender, and the like - and more specific questions about medical history, the NF diagnosis, and experiences with the condition.