Registry of Adenomas of the Pituitary and Related Disorders

• Outcome metrics for primary endoscopic endonasal surgery for low-risk patients with Cushing's disease: an evidence-based position statement from the Registry of Adenomas of the Pituitary and Related Disorders consortium
• Biochemical remission, diagnostic delays, and comorbidities of acromegaly in China: a large single-centre retrospective study
• Impact of Frailty on Surgical Outcomes of Patients With Cushing Disease Using the Multicenter Registry of Adenomas of the Pituitary and Related Disorders Registry
• Cushing's Disease Clinical Phenotype and Tumor Behavior Vary with Age: Diagnostic and Perioperative Implications
• Predictors of Durable Remission After Successful Surgery for Cushing Disease: Results From the Multicenter RAPID Registry
• Multicenter Registry of Adenomas of the Pituitary and Related Disorders: Initial Description of Cushing Disease Cohort, Surgical Outcomes, and Surgeon Characteristics
• The RAPID Consortium: A Platform for Clinical and Translational Pituitary Tumor Research
• Diagnosis and management of prolactin-secreting pituitary adenomas: a Pituitary Society international Consensus Statement

The Registry of Adenomas of the Pituitary and Related Disorders is typically a comprehensive database designed to collect, store, and analyze clinical and research data related to pituitary adenomas and associated disorders. This type of registry serves multiple purposes, including:

1. Epidemiological Research Provides insights into the prevalence, incidence, and demographic distribution of pituitary adenomas and related disorders. Identifies risk factors and trends over time. 2. Clinical Management Facilitates improved diagnosis, treatment planning, and outcomes by analyzing real-world data. Allows clinicians to compare patient outcomes to larger cohorts and identify best practices. 3. Genetic and Molecular Studies Helps in understanding the genetic and molecular basis of pituitary adenomas. Can link clinical phenotypes to genotypes or biomarkers for precision medicine. 4. Evaluation of Treatment Efficacy Assesses the effectiveness and safety of surgical, medical, and radiation therapies for pituitary adenomas. Supports the development of clinical guidelines and benchmarks. 5. Collaboration and Education Provides a platform for multi-institutional collaboration, enabling larger-scale studies. Acts as a resource for training and educating healthcare professionals and researchers. Typical Data Collected in RAPID: Patient Demographics: Age, sex, ethnicity. Clinical Presentation: Symptoms, hormonal profiles, imaging findings. Pathology: Histological subtypes, genetic mutations. Treatment Details: Types of surgery, medications (e.g., dopamine agonists), and radiotherapy. Follow-Up Data: Recurrence rates, complications, and long-term outcomes. Challenges and Ethical Considerations: Data Standardization: Ensuring consistency in data collection across multiple centers. Privacy and Security: Safeguarding patient confidentiality and complying with regulations like GDPR or HIPAA. Longitudinal Follow-Up: Maintaining contact with patients over time for ongoing data collection.

Despite growing interest in how patient frailty affects outcomes (eg, in neuro-oncology), its role after transsphenoidal surgery for Cushing disease (CD) remains unclear. They evaluated the effect of frailty on Cushing's disease prognosis using the Registry of Adenomas of the Pituitary and Related Disorders (RAPID) data set from a collaboration of US academic pituitary centers.

Data on consecutive surgically treated patients with CD (2011-2023) were compiled using the 11-factor modified frailty index. Patients were classified as fit (score, 0-1), managing well (score, 2-3), and mildly frail (score, 4-5). Univariable and multivariable analyses were conducted to examine outcomes.

Data were analyzed for 318 patients (193 fit, 113 managing well, 12 mildly frail). Compared with fit and managing well patients, mildly frail patients were older (mean ± SD 39.7 ± 14.2 and 48.9 ± 12.2 vs 49.4 ± 8.9 years, P < .001) but did not different by sex, race, and other factors. They had significantly longer hospitalizations (3.7 ± 2.0 and 4.5 ± 3.5 vs 5.3 ± 3.5 days, P = .02), even after multivariable analysis (β = 1.01, P = .007) adjusted for known predictors of prolonged hospitalization (age, Knosp grade, surgeon experience, American Society of Anesthesiologists grade, complications, frailty). Patients with mild frailty were more commonly discharged to skilled nursing facilities (0.5% [1/192] and 4.5% [5/112] vs 25% [3/12], P < .001). Most patients underwent gross total resection (84.4% [163/193] and 79.6% [90/113] vs 83% [10/12]). No difference in overall complications was observed; however, venous thromboembolism was more common in mildly frail (8%, 1/12) than in fit (0.5%, 1/193) and managing well (2.7%, 3/113) patients ( P = .04). No difference was found in 90-day readmission rates.

These results demonstrate that mild frailty predicts CD surgical outcomes and may inform preoperative risk stratification. Frailty-influenced outcomes other than age and tumor characteristics may be useful for prognostication. Future studies can help identify strategies to reduce the disease burden for frail patients with hypercortisolemia ¹⁾.