Table 5.
NF1-Specific Transition Tools and Resources
| Tool | Access | Audience |
|---|---|---|
|
Just for Teens: Living with NF1 Children’s Tumor Foundation |
https://www.ctf.org/images/uploads/resources/NF-Just-For-Teens_Living-with-NF.pdf | Patient English and Spanish |
|
Living with Neurofibromatosis: A Guide for Teens and Young Adults Children’s Hospital St. Louis, Washington University in St. Louis |
https://nfcenter.wustl.edu/wp-content/uploads/2011/06/living-with-NF-clean.pdf | Patient English |
|
Transitioning to Adulthood: A Guide for Individuals with NF1 Children’s Hospital St. Louis, Washington University in St. Louis |
https://nfcenter.wustl.edu/wp-content/uploads/2011/06/Transitioning-to-Adulthood-Brochure.pdf | Patient English |
|
Talking about Neurofibromatosis: A Guide for Teens Children’s Hospital St. Louis, Washington University in St. Louis |
https://nfcenter.wustl.edu/wp-content/uploads/2010/10/SLC6906_NeurofibromatosisTeenBrochureR1.pdf | Patient English |
|
The Guide for NF Patients and Caregivers Transitioning (PACT) to Adult Care NF Collective |
https://nfcollective.org/uploads/general/Transitioning_to_Adult_Care_1-19b.pdf | Patient English |
|
Living with Neurofibromatosis type 1: A Guide for Adults Children’s Tumor Foundation |
https://www.ctf.org/images/uploads/documents/CTF-Adults_with_NF_Brochure_2022.v10_FINAL_.pdf | Patient English and Spanish |
|
Living with Neurofibromatosis type 1: A Guide for Adults Children’s Hospital St. Louis, Washington University in St. Louis |
https://nfcenter.wustl.edu/wp-content/uploads/2012/04/Adult-NF-Brochure.pdf | Patient English |
|
Telling People you have Neurofibromatosis Type 1 Children’s Hospital St. Louis, Washington University in St. Louis |
https://nfcenter.wustl.edu/wp-content/uploads/2011/10/Disclosure-Brochure.pdf | Patient English |
|
Preparing for Your Clinic Visit Children’s Tumor Foundation |
https://www.ctf.org/images/uploads/documents/Preparing_for_Your_Clinic_Visit.pdf | Patient English |
|
Reproductive Options for People with NF1, NF2, and Schwannomatosis Neurofibromatosis Network |
https://nfnetwork.org/data/uploads/nf1-educational-materials/reproductive-options-for-people-with-nf.pdf | Patient English |
|
Intimacy and NF1: A Resource Exploring the Impact of NF1 on Intimacy and Relationships The University of Alabama at Birmingham |
https://sites.uab.edu/nf1intimacy/ | Patient English |
|
Neurofibromatosis type 1 - Transition Readiness Assessment Questionnaire (NF1-TRAQ) A non-validated tool to assess NF1-specific components of transition readiness.24 |
https://pubmed.ncbi.nlm.nih.gov/32969737/ | Provider English |
Note: Several transition tools and resources exist for patients, families, educators, and providers.