Since its launch in 2012, the NF Registry has been available in English only. Now, to make the registry a truly international effort, CTF will translate the registry surveys into multiple other languages. This enhancement will grow and diversify the registry population, making it a bigger and more powerful tool in the fight against NF in all its forms.
Translations of the Registry into Spanish, French, Portuguese, and Italian are being implemented. This is made possible by the generous support of CTF donors and by European patient organizations: Our virtual fundraising event, “A Musical Journey to End NF,” headlined by Sandro Norton in Portugal raised funding to support the Spanish and Portuguese translations, and Switzerland-based Romand Mutual Aid Group Association for Neurofibromatosis is contributing funding for the translation into French.
A major objective of the Registry is to speed clinical trial enrollments by engaging patients. By making themselves available and sharing de-identified data about their experiences over time, patients are showing the world that our NF community is united in its desire to take part in driving the search for better treatments and care — that they want to learn about participating in clinical trials and to offer insights into their own views and preferences.
Patients and families support the registry because they believe in it. As one participant commented,
“The reason I joined the registry is because I know there is power in numbers, and I know and trust CTF. We NF patients need to stand up and be counted if we want to attract the attention of those who might develop drug treatments for our condition. Even if you do not participate in a clinical trial, joining the registry helps increase awareness and understanding about NF.”
The translated versions of the Registry are expected to be fully implemented in the registry by February 2021. The NF Registry can be accessed at nfregistry.org.
