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Background: Approximately 25% of cancer patients are diagnosed with rare cancers and face unique challenges. Decentralized patient-partnered research efforts, like Count Me In provide an avenue for patients to participate in research that overcomes key barriers to address disparities in rare cancer research to accelerate discovery., Objectives: Projects in metastatic breast cancer (The Metastatic Breast Cancer Project; MBCproject) and angiosarcoma (The Angiosarcoma Project; ASCproject) highlight disparities that exist for all cancer patients and underscore those that are compounded for rare cancer patients., Design: Through Count Me In's research platform, patients visit a website to enroll in the study and complete surveys, which allows us to access their medical records and biospecimens. Clinically annotated sequencing data are de-identified and released on research platforms., Methods: MBCproject and ASCproject data were analyzed to identify differences between patients with a more common and rare cancer, respectively. The analysis included outreach strategies, patient-reported themes, and distance traveled for care., Results: As of September 28, 2023, 3742 patients have enrolled in MBCproject and 491 patients have enrolled in the ASCproject from across the United States and Canada. Outreach strategies were tailored to resource availability. Using survey information, it was observed that patients with a rare cancer (angiosarcoma) traveled longer distances to receive care than those with a more common cancer (metastatic breast cancer) for three major cancer centers. Patients with rare and common cancers highlighted different themes when asked about their disease experience. Themes like misdiagnosis and discontent with resource availability came up more often for rare cancer patients. Data sharing and collaboration in angiosarcoma research enabled rapid discoveries with clinical impact., Conclusion: Count Me In's platform has led to unprecedented data generation and findings in rare cancer through partnering with patients. Directly engaging with patients to generate and share data while emphasizing collaboration sets the foundation for a more equitable future., (© The Author(s), 2024.)

Molecular profiling studies have enabled discoveries for metastatic prostate cancer (MPC) but have predominantly occurred in academic medical institutions and involved non-representative patient populations. We established the Metastatic Prostate Cancer Project (MPCproject, mpcproject.org), a patient-partnered initiative to involve patients with MPC living anywhere in the US and Canada in molecular research. Here, we present results from our partnership with the first 706 MPCproject participants. While 41% of patient partners live in rural, physician-shortage, or medically underserved areas, the MPCproject has not yet achieved racial diversity, a disparity that demands new initiatives detailed herein. Among molecular data from 333 patient partners (572 samples), exome sequencing of 63 tumor and 19 cell-free DNA (cfDNA) samples recapitulated known findings in MPC, while inexpensive ultra-low-coverage sequencing of 318 cfDNA samples revealed clinically relevant AR amplifications. This study illustrates the power of a growing, longitudinal partnership with patients to generate a more representative understanding of MPC., Competing Interests: DECLARATION OF INTERESTS M.X.H. has been a consultant to Amplify Medicines and Ikena Oncology and is a current employee of Genentech/Roche. E.S.L. is currently in the process of divesting any relevant holdings. N.W. reports advisory relationships and consulting with Eli Lilly and Co.; advising and stockholding interest in Relay Therapeutics; and grant support from Puma Biotechnology. E.M.V.A. reports advisory relationships and consulting with Tango Therapeutics, Genome Medical, Invitae, Illumina, Enara Bio, Mani-fold Bio, and Janssen; research support from Novartis and BMS; equity in Tango Therapeutics, Genome Medical, Syapse, Mani-fold Bio, and Enara Bio; and travel reimbursement from Roche and Genentech, outside the submitted work.

The intensity of sound emanating from the discharge of magnetic coils used in repetitive transcranial magnetic stimulation (rTMS) can potentially cause acoustic trauma. Per Occupational Safety and Health Administration (OSHA) standards for safety of noise exposure, hearing protection is recommended beyond restricted levels of noise and time limits. We measured the sound pressure levels (SPLs) from four rTMS coils with the goal of assessing if the acoustic artifact levels are of sufficient amplitude to warrant protection from acoustic trauma per OSHA standards. We studied the SPLs at two frequencies (5 and 10 Hz), three machine outputs (MO) (60, 80 and 100%), and two distances from the coil (5 and 10 cm). We found that the SPLs were louder at closer proximity from the coil and directly dependent on the MO. We also found that in all studied conditions, SPLs were lower than the OSHA permissible thresholds for short (<15 min) acoustic exposure, but at extremes of use, may generate sufficient noise to warrant ear protection with prolonged (>8 h) exposure., (Copyright © 2014 Elsevier Inc. All rights reserved.)

We describe a patient with a probable diagnosis of idiopathic late-onset cerebellar atrophy who shows improvement of limb coordination, speech, and gait following 21 days of transcranial magnetic stimulation (TMS) applied to scalp regions presumably corresponding to the cerebellum. This case study provides, for the first time, a quantitative assessment of gait improvement in response to TMS therapy in ataxia, as well as neurophysiological evidence in support of modification of cerebellar-cortical interaction that may underlie some of the improvements.