Woburn

Researchers are comparing the rates of surgical and minimally invasive interventions, as well as any harms, in Medicare beneficiaries treated with the MILD procedure versus those treated with interspinous process decompression IPD for lumbar spinal stenosis with neurogenic claudication. This observational study uses Medicare claims data to follow patients for 24 months after their initial procedure starting from January 1, 2017. The purpose is to evaluate outcomes between these two types of procedures without requiring prior patient enrollment or consent. The study includes two groups patients who received MILD, which is a percutaneous image-guided lumbar decompression performed under fluoroscopic guidance through a dorsal approach to the spine, and patients who received IPD, a different device-based decompression procedure. Data on reoperations and complications will be collected for both groups over a 24-month follow-up period using Medicare claims. Enrollment continues until the sponsor decides to stop. Participants involvement is passive as the study uses existing Medicare claims data. Researchers will monitor rates of harms related to the initial procedure and subsequent surgical or minimally invasive interventions over two years. No direct patient visits or interventions are conducted, and the study is exempt from institutional review board oversight. The total study duration extends to December 2026, covering cases treated since early 2017.

The Shwachman-Diamond Syndrome Global Patient Survey and Collaboration Program SDS-GPS provides a secure online platform for patients and families worldwide to share their experiences living with Shwachman-Diamond Syndrome SDS and related conditions. The program aims to deepen understanding of SDS, enhance patient lives, and speed up the development of new therapies and cures by gathering patient-reported data. SDS-GPS was created with input from patients, families, advocates, researchers, and clinicians to build a supportive global community that drives research forward. Participants create a free account to enter their information and complete surveys covering topics such as demographics, medical history, treatments, disease progression, care access, and quality of life. These surveys can be completed anytime from home and saved for later. The platform supports multiple languages and allows participants to track their medical appointments, medications, and symptoms. The program collects de-identified data to prioritize research, share knowledge, and connect participants with relevant clinical trials and registries. Throughout the program, participants provide ongoing information about symptoms, genetics, quality of life, and disease burden at baseline and at regular intervals such as every 12 months or multiple times per year. This long-term observational approach helps researchers understand patient needs and outcomes. Participation involves no clinic visits or virtual appointments, and privacy and security are maintained at the highest standards. The program offers early access to new research opportunities and supports participants in sharing information with their care teams as they choose.