A Decentralized Clinical Trial to Promote Evidence-Based Care for Underserved Patients Wit
The goal of this fully decentralized, randomized controlled trial is to compare the efficacy of two educational interventions for individuals with Neurofibromatosis 1 (NF1). The primary objective of the study is to determine which intervention leads to higher rates of evidenced-based health screenings for NF1 patients
| Condition(s) | Neurofibromatosis 1 |
|---|---|
| Status | Recruiting |
| Phase | NA |
| Study type | Interventional |
| Summary | The goal of this fully decentralized, randomized controlled trial is to compare the efficacy of two educational interventions for individuals with Neurofibromatosis 1 (NF1). The primary objective of the study is to determine which intervention leads to higher rates of evidenced-based health screenings for NF1 patients in primary care settings. Adults with NF1 and parents/guardians of children with NF1 from across the U.S. who do not go to a specialized NF clinic and who have an upcoming annual wellness visits (e.g. an annual physical, a well-child visit, etc.) scheduled with a primary care provider (PCP) are eligible to enroll in the study. To see if you might be eligible, fill out a prescreening survey here: https://redcap.link/mynfguide |
| Who can participate | Adult Inclusion Criteria: * Currently lives in the United States (including Puerto Rico and other United States territories) * Has a clinical diagnosis of neurofibromatosis 1 * Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network * Has an in-person, well-person visit with a primary care provider scheduled within 3 months of their consent * Speaks English or Spanish Parent/Guardian of a Child with NF1 Inclusion Criteria: * Currently lives in the United States (including Puerto Rico and other United States territories) * Cares for a child (age \<18 years) with a clinical diagnosis of neurofibromatosis 1 * Does not attend an NF clinic within the Children's Tumor Foundation NF Clinic Network * Their child has an in-person, well-person visit with a primary care |
| Sex | All |
| Lead sponsor | Massachusetts General Hospital |
| Locations | Boston, Massachusetts, United States |
| Start date | 2024-12-03 |
| NCT ID | NCT06262113 |
| Official listing | https://clinicaltrials.gov/study/NCT06262113 |