The Children's Tumor Foundation is pleased to announce that Frank Buono, PhD, Associate Research Scientist in Psychiatry at Yale University, has been awarded a Clinical Research Award. The award is accompanied by a grant to fund Buono’s study, “The Development and Validation of the NF Pain Module (NFPM) within iCanCope-NF Clinical Trial.
Buono’s study will revolve around Neurofibromatosis Type 1 (NF1), the most common of the three types of neurofibromatosis (NF). NF is a genetic disorder that causes tumors to grow all over the body. It affects all populations, races, ethnicities, and genders equally and can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.
In some patients, NF1 may cause chronic pain. There is limited research on how to treat the pain. Buono intends to develop a customized pain assessment tool specifically for NF1 that evaluates pain comprehensively and can be used for clinical trials and treatment planning.
“I anticipate that developing the NF Pain Module (NFPM) to understand the characterization and symptoms of pain (somatic, neuropathic or nociplastic), along with well-established measures of severity and interference will provide researchers and clinicians a tool that will facilitate differentiation in pain and tracking for adults suffering from NF1. Additionally, the validation of this assessment may facilitate and improve quality of life for individualized treatment for those suffering from pain symptoms due to NF1.”
The project has three aims:
The mission of the Children’s Tumor Foundation, a 501(c)(3) not-for-profit organization, is to drive research, expand knowledge, and advance care for the NF community. A Clinical Research Award (CRA) from the Children’s Tumor Foundation (CTF) supports early-stage pilot clinical trials of candidate therapeutics, or interventions for treatment of physical or psychosocial manifestations of NF1, NF2, and schwannomatosis. Learn more at ctf.org.
- Aim 1: To demonstrate the variability in the pain experience across individuals with NF1 through an initial survey and subsequent focus groups of medical professionals and individuals with NF1.
- Aim 2: to develop the NF Pain Module (NFPM) tool and establish content validity by obtaining input from chronic pain experts, medical professionals and patients with NF.
- Aim 3: To elucidate the pain experience comprehensively by assessing construct and incremental validity with adults suffering from NF1 in conjunction with the implementation of the iCanCope mobile application clinical trial.
The mission of the Children’s Tumor Foundation, a 501(c)(3) not-for-profit organization, is to drive research, expand knowledge, and advance care for the NF community. A Clinical Research Award (CRA) from the Children’s Tumor Foundation (CTF) supports early-stage pilot clinical trials of candidate therapeutics, or interventions for treatment of physical or psychosocial manifestations of NF1, NF2, and schwannomatosis. Learn more at ctf.org.
