Purpose: Rare diseases occur in <50 per 100000 people and require lifelong management. However, essential epidemiological data on such diseases are lacking, and a consecutive monitoring system across time and regions remains to be established. Standardized digital phenotypes are required to leverage an international data network for research on rare endocrine diseases. We developed digital phenotypes for rare endocrine diseases using the observational medical outcome partnership common data model. Materials and Methods: Digital phenotypes of three rare endocrine diseases (medullary thyroid cancer, hypoparathyroidism, pheochromocytoma/paraganglioma) were validated across three databases that use different vocabularies: Severance Hospital’s electronic health record from South Korea; IQVIA’s United Kingdom (UK) database for general practitioners; and IQVIA’s United States (US) hospital database for general hospitals. We estimated the performance of different digital phenotyping methods based on International Classification of Diseases (ICD)-10 in the UK and the US or systematized nomenclature of medicine clinical terms (SNOMED CT) in Korea. Results: The positive predictive value of digital phenotyping was higher using SNOMED CT-based phenotyping than ICD-10-based phenotyping for all three diseases in Korea (e.g., pheochromocytoma/paraganglioma: ICD-10, 58%–62%; SNOMED CT, 89%). Estimated incidence rates by digital phenotyping were as follows: medullary thyroid cancer, 0.34–2.07 (Korea), 0.13–0.30 (US); hypoparathyroidism, 0.40–1.20 (Korea), 0.59–1.01 (US), 0.00–1.78 (UK); and pheochromocytoma/paraganglioma, 0.95–1.67 (Korea), 0.35–0.77 (US), 0.00–0.49 (UK). Conclusion Our findings demonstrate the feasibility of developing digital phenotyping of rare endocrine diseases and highlight the importance of implementing SNOMED CT in routine clinical practice to provide granularity for research.

Purpose: Rare diseases occur in <50 per 100000 people and require lifelong management. However, essential epidemiological data on such diseases are lacking, and a consecutive monitoring system across time and regions remains to be established. Standardized digital phenotypes are required to leverage an international data network for research on rare endocrine diseases. We developed digital phenotypes for rare endocrine diseases using the observational medical outcome partnership common data model. Materials and Methods: Digital phenotypes of three rare endocrine diseases (medullary thyroid cancer, hypoparathyroidism, pheochromocytoma/paraganglioma) were validated across three databases that use different vocabularies: Severance Hospital’s electronic health record from South Korea; IQVIA’s United Kingdom (UK) database for general practitioners; and IQVIA’s United States (US) hospital database for general hospitals. We estimated the performance of different digital phenotyping methods based on International Classification of Diseases (ICD)-10 in the UK and the US or systematized nomenclature of medicine clinical terms (SNOMED CT) in Korea. Results: The positive predictive value of digital phenotyping was higher using SNOMED CT-based phenotyping than ICD-10-based phenotyping for all three diseases in Korea (e.g., pheochromocytoma/paraganglioma: ICD-10, 58%–62%; SNOMED CT, 89%). Estimated incidence rates by digital phenotyping were as follows: medullary thyroid cancer, 0.34–2.07 (Korea), 0.13–0.30 (US); hypoparathyroidism, 0.40–1.20 (Korea), 0.59–1.01 (US), 0.00–1.78 (UK); and pheochromocytoma/paraganglioma, 0.95–1.67 (Korea), 0.35–0.77 (US), 0.00–0.49 (UK). Conclusion Our findings demonstrate the feasibility of developing digital phenotyping of rare endocrine diseases and highlight the importance of implementing SNOMED CT in routine clinical practice to provide granularity for research.

Purpose: Rare diseases occur in <50 per 100000 people and require lifelong management. However, essential epidemiological data on such diseases are lacking, and a consecutive monitoring system across time and regions remains to be established. Standardized digital phenotypes are required to leverage an international data network for research on rare endocrine diseases. We developed digital phenotypes for rare endocrine diseases using the observational medical outcome partnership common data model. Materials and Methods: Digital phenotypes of three rare endocrine diseases (medullary thyroid cancer, hypoparathyroidism, pheochromocytoma/paraganglioma) were validated across three databases that use different vocabularies: Severance Hospital’s electronic health record from South Korea; IQVIA’s United Kingdom (UK) database for general practitioners; and IQVIA’s United States (US) hospital database for general hospitals. We estimated the performance of different digital phenotyping methods based on International Classification of Diseases (ICD)-10 in the UK and the US or systematized nomenclature of medicine clinical terms (SNOMED CT) in Korea. Results: The positive predictive value of digital phenotyping was higher using SNOMED CT-based phenotyping than ICD-10-based phenotyping for all three diseases in Korea (e.g., pheochromocytoma/paraganglioma: ICD-10, 58%–62%; SNOMED CT, 89%). Estimated incidence rates by digital phenotyping were as follows: medullary thyroid cancer, 0.34–2.07 (Korea), 0.13–0.30 (US); hypoparathyroidism, 0.40–1.20 (Korea), 0.59–1.01 (US), 0.00–1.78 (UK); and pheochromocytoma/paraganglioma, 0.95–1.67 (Korea), 0.35–0.77 (US), 0.00–0.49 (UK). Conclusion Our findings demonstrate the feasibility of developing digital phenotyping of rare endocrine diseases and highlight the importance of implementing SNOMED CT in routine clinical practice to provide granularity for research.

Purpose: Rare diseases occur in <50 per 100000 people and require lifelong management. However, essential epidemiological data on such diseases are lacking, and a consecutive monitoring system across time and regions remains to be established. Standardized digital phenotypes are required to leverage an international data network for research on rare endocrine diseases. We developed digital phenotypes for rare endocrine diseases using the observational medical outcome partnership common data model. Materials and Methods: Digital phenotypes of three rare endocrine diseases (medullary thyroid cancer, hypoparathyroidism, pheochromocytoma/paraganglioma) were validated across three databases that use different vocabularies: Severance Hospital’s electronic health record from South Korea; IQVIA’s United Kingdom (UK) database for general practitioners; and IQVIA’s United States (US) hospital database for general hospitals. We estimated the performance of different digital phenotyping methods based on International Classification of Diseases (ICD)-10 in the UK and the US or systematized nomenclature of medicine clinical terms (SNOMED CT) in Korea. Results: The positive predictive value of digital phenotyping was higher using SNOMED CT-based phenotyping than ICD-10-based phenotyping for all three diseases in Korea (e.g., pheochromocytoma/paraganglioma: ICD-10, 58%–62%; SNOMED CT, 89%). Estimated incidence rates by digital phenotyping were as follows: medullary thyroid cancer, 0.34–2.07 (Korea), 0.13–0.30 (US); hypoparathyroidism, 0.40–1.20 (Korea), 0.59–1.01 (US), 0.00–1.78 (UK); and pheochromocytoma/paraganglioma, 0.95–1.67 (Korea), 0.35–0.77 (US), 0.00–0.49 (UK). Conclusion Our findings demonstrate the feasibility of developing digital phenotyping of rare endocrine diseases and highlight the importance of implementing SNOMED CT in routine clinical practice to provide granularity for research.

Purpose: Rare diseases occur in <50 per 100000 people and require lifelong management. However, essential epidemiological data on such diseases are lacking, and a consecutive monitoring system across time and regions remains to be established. Standardized digital phenotypes are required to leverage an international data network for research on rare endocrine diseases. We developed digital phenotypes for rare endocrine diseases using the observational medical outcome partnership common data model. Materials and Methods: Digital phenotypes of three rare endocrine diseases (medullary thyroid cancer, hypoparathyroidism, pheochromocytoma/paraganglioma) were validated across three databases that use different vocabularies: Severance Hospital’s electronic health record from South Korea; IQVIA’s United Kingdom (UK) database for general practitioners; and IQVIA’s United States (US) hospital database for general hospitals. We estimated the performance of different digital phenotyping methods based on International Classification of Diseases (ICD)-10 in the UK and the US or systematized nomenclature of medicine clinical terms (SNOMED CT) in Korea. Results: The positive predictive value of digital phenotyping was higher using SNOMED CT-based phenotyping than ICD-10-based phenotyping for all three diseases in Korea (e.g., pheochromocytoma/paraganglioma: ICD-10, 58%–62%; SNOMED CT, 89%). Estimated incidence rates by digital phenotyping were as follows: medullary thyroid cancer, 0.34–2.07 (Korea), 0.13–0.30 (US); hypoparathyroidism, 0.40–1.20 (Korea), 0.59–1.01 (US), 0.00–1.78 (UK); and pheochromocytoma/paraganglioma, 0.95–1.67 (Korea), 0.35–0.77 (US), 0.00–0.49 (UK). Conclusion Our findings demonstrate the feasibility of developing digital phenotyping of rare endocrine diseases and highlight the importance of implementing SNOMED CT in routine clinical practice to provide granularity for research.

Purpose: Cystoscopy is a diagnostic test performed frequently in urology outpatient clinics. Despite the large number of inspections, the associated pain, discomfort, or anxiety can markedly affect patient compliance and adherence to subsequent surveillance protocols. This study conducted a prospective, randomized study to investigate the potential efficacy of music and pyuria on pain or anxiety during outpatient cystoscopy. Materials and Methods: In this single-institution, randomized study, the participants were assigned to a music-intervention or non-music control group. The music-intervention group underwent an identical procedure with the addition of Johann Sebastian Bach’s “Air on the G String” from Suite No. 3 in D major, BWV 1068. Urinalysis was performed to determine if pyuria affects pain during the procedure. Results: The patient-reported outcomes, encompassing the changes in the STAI-X-1 (State-Trait Anxiety Inventory-X-1) scores, subjective levels of discomfort, embarrassment, satisfaction, and pain, were similar in the two groups. In contrast, the surgeons reported statistically significant differences in their evaluations of the same items as patient-reported outcomes of the two groups. The patient-reported pain showed no significant differences between the pyuria-negative group (0-2 and 3-5 WBC/HPF) and pyuria-positive group (>5 WBC/HPF). Conclusions The data from this study do not support the hypothesis that musical intervention during cystoscopy alleviates pain or anxiety to any significant extent.In addition, pyuria did not affect the patient’s reported pain. Nevertheless, a notable impact was observed in the surgeons’ assessments, suggesting that the musical accompaniment may alter the surgeons’ perception of patient pain and anxiety levels throughout the procedure.

Purpose: Cystoscopy is a diagnostic test performed frequently in urology outpatient clinics. Despite the large number of inspections, the associated pain, discomfort, or anxiety can markedly affect patient compliance and adherence to subsequent surveillance protocols. This study conducted a prospective, randomized study to investigate the potential efficacy of music and pyuria on pain or anxiety during outpatient cystoscopy. Materials and Methods: In this single-institution, randomized study, the participants were assigned to a music-intervention or non-music control group. The music-intervention group underwent an identical procedure with the addition of Johann Sebastian Bach’s “Air on the G String” from Suite No. 3 in D major, BWV 1068. Urinalysis was performed to determine if pyuria affects pain during the procedure. Results: The patient-reported outcomes, encompassing the changes in the STAI-X-1 (State-Trait Anxiety Inventory-X-1) scores, subjective levels of discomfort, embarrassment, satisfaction, and pain, were similar in the two groups. In contrast, the surgeons reported statistically significant differences in their evaluations of the same items as patient-reported outcomes of the two groups. The patient-reported pain showed no significant differences between the pyuria-negative group (0-2 and 3-5 WBC/HPF) and pyuria-positive group (>5 WBC/HPF). Conclusions The data from this study do not support the hypothesis that musical intervention during cystoscopy alleviates pain or anxiety to any significant extent.In addition, pyuria did not affect the patient’s reported pain. Nevertheless, a notable impact was observed in the surgeons’ assessments, suggesting that the musical accompaniment may alter the surgeons’ perception of patient pain and anxiety levels throughout the procedure.

Purpose: Cystoscopy is a diagnostic test performed frequently in urology outpatient clinics. Despite the large number of inspections, the associated pain, discomfort, or anxiety can markedly affect patient compliance and adherence to subsequent surveillance protocols. This study conducted a prospective, randomized study to investigate the potential efficacy of music and pyuria on pain or anxiety during outpatient cystoscopy. Materials and Methods: In this single-institution, randomized study, the participants were assigned to a music-intervention or non-music control group. The music-intervention group underwent an identical procedure with the addition of Johann Sebastian Bach’s “Air on the G String” from Suite No. 3 in D major, BWV 1068. Urinalysis was performed to determine if pyuria affects pain during the procedure. Results: The patient-reported outcomes, encompassing the changes in the STAI-X-1 (State-Trait Anxiety Inventory-X-1) scores, subjective levels of discomfort, embarrassment, satisfaction, and pain, were similar in the two groups. In contrast, the surgeons reported statistically significant differences in their evaluations of the same items as patient-reported outcomes of the two groups. The patient-reported pain showed no significant differences between the pyuria-negative group (0-2 and 3-5 WBC/HPF) and pyuria-positive group (>5 WBC/HPF). Conclusions The data from this study do not support the hypothesis that musical intervention during cystoscopy alleviates pain or anxiety to any significant extent.In addition, pyuria did not affect the patient’s reported pain. Nevertheless, a notable impact was observed in the surgeons’ assessments, suggesting that the musical accompaniment may alter the surgeons’ perception of patient pain and anxiety levels throughout the procedure.

Purpose: Cystoscopy is a diagnostic test performed frequently in urology outpatient clinics. Despite the large number of inspections, the associated pain, discomfort, or anxiety can markedly affect patient compliance and adherence to subsequent surveillance protocols. This study conducted a prospective, randomized study to investigate the potential efficacy of music and pyuria on pain or anxiety during outpatient cystoscopy. Materials and Methods: In this single-institution, randomized study, the participants were assigned to a music-intervention or non-music control group. The music-intervention group underwent an identical procedure with the addition of Johann Sebastian Bach’s “Air on the G String” from Suite No. 3 in D major, BWV 1068. Urinalysis was performed to determine if pyuria affects pain during the procedure. Results: The patient-reported outcomes, encompassing the changes in the STAI-X-1 (State-Trait Anxiety Inventory-X-1) scores, subjective levels of discomfort, embarrassment, satisfaction, and pain, were similar in the two groups. In contrast, the surgeons reported statistically significant differences in their evaluations of the same items as patient-reported outcomes of the two groups. The patient-reported pain showed no significant differences between the pyuria-negative group (0-2 and 3-5 WBC/HPF) and pyuria-positive group (>5 WBC/HPF). Conclusions The data from this study do not support the hypothesis that musical intervention during cystoscopy alleviates pain or anxiety to any significant extent.In addition, pyuria did not affect the patient’s reported pain. Nevertheless, a notable impact was observed in the surgeons’ assessments, suggesting that the musical accompaniment may alter the surgeons’ perception of patient pain and anxiety levels throughout the procedure.

Purpose: Cystoscopy is a diagnostic test performed frequently in urology outpatient clinics. Despite the large number of inspections, the associated pain, discomfort, or anxiety can markedly affect patient compliance and adherence to subsequent surveillance protocols. This study conducted a prospective, randomized study to investigate the potential efficacy of music and pyuria on pain or anxiety during outpatient cystoscopy. Materials and Methods: In this single-institution, randomized study, the participants were assigned to a music-intervention or non-music control group. The music-intervention group underwent an identical procedure with the addition of Johann Sebastian Bach’s “Air on the G String” from Suite No. 3 in D major, BWV 1068. Urinalysis was performed to determine if pyuria affects pain during the procedure. Results: The patient-reported outcomes, encompassing the changes in the STAI-X-1 (State-Trait Anxiety Inventory-X-1) scores, subjective levels of discomfort, embarrassment, satisfaction, and pain, were similar in the two groups. In contrast, the surgeons reported statistically significant differences in their evaluations of the same items as patient-reported outcomes of the two groups. The patient-reported pain showed no significant differences between the pyuria-negative group (0-2 and 3-5 WBC/HPF) and pyuria-positive group (>5 WBC/HPF). Conclusions The data from this study do not support the hypothesis that musical intervention during cystoscopy alleviates pain or anxiety to any significant extent.In addition, pyuria did not affect the patient’s reported pain. Nevertheless, a notable impact was observed in the surgeons’ assessments, suggesting that the musical accompaniment may alter the surgeons’ perception of patient pain and anxiety levels throughout the procedure.