Korea hemophilia foundation registry trends 1991–2012: patient registry, demographics, health services utilization

Kim, D. H.; Kim, S. K.; Park, S. K.; Yoo, Kyung Yeon; Hwang, Thomas J; Choi, Yong Mook

doi:10.1111/hae.12744

Cited by 5 publications

(6 citation statements)

References 8 publications

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“…In a previous report from 2012, 118 patients (6.3%) had positive HCV RNA among 1,862 patients with hemophilia. 1 It was difficult to enroll patients in our study because some patients had already received treatment with Peg-IFN and RBV between 2012 and 2014, thus they were not eligible for the current study.…”

Section: Discussionmentioning

confidence: 99%

“… 1 Especially, the prevalence of hepatitis C (HCV RNA positive) in patients with hemophilia decreased strikingly from 13.5% to 1.8% between the 1990s and 2015. 1 Modern treatments of hemophilia promise a remarkable increase of the life expectancy of patients. Therefore, the quality of life of hemophilia patients with comorbidity is a major issue.…”

Section: Introductionmentioning

confidence: 99%

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Direct Acting Antiviral Agents in Korean Patients with Chronic Hepatitis C and Hemophilia Who Are Treatment-Naïve or Treatment-Experienced

et al. 2017

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Background/AimsChronic hepatitis C (CHC) is a major comorbidity in patients with hemophilia.MethodsPatients (n=30) were enrolled between September 2015 and April 2016. Twenty-six patients were genotype 1 (1b, n=21; 1a, n=5) and four patients were genotype 2a/2b. Among 21 patients with genotype 1b, Y93H resistance-associated variants (RAVs) were detected in three patients (14.3%). We evaluated sustained virologic response (SVRs) at 12 weeks, as well as relapse and safety.ResultsFive patients with genotype 1a and three patients with genotype 1b (RAV positive) received ledipasvir/sofosbuvir for 12 weeks. SVR12 rate was 100% (8/8). Eleven patients with genotype 1b were treatment-naïve and received daclatasvir plus asunaprevir for 24 weeks. SVR12 rate was 91% (10/11). One patient experienced viral breakthrough without RAV at 12 weeks. Seven treatment-experienced patients with genotype 1b received daclatasvir plus asunaprevir for 24 weeks. SVR12 rate was 85.7% (6/7). One patient experienced viral breakthrough with RAV (L31M, Y93H) at 12 weeks. Four patients with genotype 2a/2b received sofosbuvir plus ribavirin for 12 weeks. SVR12 rate was 100% (4/4). No serious adverse event-related discontinuations were noted.ConclusionsNew direct acting antiviral treatment achieved high SVRs rates at 12 weeks in CHC patients with hemophilia without serious adverse events.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Direct Acting Antiviral Agents in Korean Patients with Chronic Hepatitis C and Hemophilia Who Are Treatment-Naïve or Treatment-Experienced

et al. 2017

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“…While the total Korean population increased by 12%, the KHF data showed a 200% increase in hemophilia from 997 patients in 1991 to 2,148 in 2012. 9 We also found a moderate increase of the estimated ASR in HA from 2010 (1.78/100,000) to 2014 (3.15/100,000) though significant change in the simple number of patients with HA did not show from 2010 to 2015.…”

Section: Discussionmentioning

confidence: 48%

“…Most have been reported by the KHF. 3 4 9 10 To the best of our knowledge, this is the first nationwide study of the entire population to analyze the incidence of congenital bleeding disorders in Korea using HIRA databases.…”

Section: Discussionmentioning

confidence: 99%

Epidemiology of Congenital Bleeding Disorders: a Nationwide Population-based Korean Study

et al. 2020

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Background: Except for data in the Korea Hemophilia Foundation Registry, little is known of the epidemiology of congenital bleeding disorders in Korea. Methods: Data were obtained from the Korean Health Insurance Review and Assessment Service (HIRA) database. Results: From 2010 to 2015, there were 2,029 patients with congenital bleeding disorders in the Korean HIRA database: 38% (n = 775) of these patients had hemophilia A (HA), 25% (n = 517) had von Willebrand disease (vWD), 7% (n = 132) had hemophilia B (HB), and 25% (n = 513) had less common factor deficiencies. The estimated age-standardized incidence rate (ASR) of HA and HB was 1.78-3.15/100,000 and 0.31-0.51/100,000, respectively. That of vWD was 1.38-1.95/100,000. The estimated ASR of HA showed increase over time though the number of new patients did not increase. Most patients with congenital bleeding disorders were younger than 19 years old (47.8%), and most were registered in Gyeonggi (22.1%) and Seoul (19.2%). Conclusion: This is the first nationwide population-based study of congenital bleeding disorders in Korea. This study provides data that will enable more accurate estimations of patients with vWD. This information will help advance the comprehensive care of congenital bleeding disorders. We need to continue to obtain more detailed information on patients to improve the management of these diseases.

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“…This deficiency leads to excessive bleeding following trauma or injury and spontaneous bleeding episodes, primarily in the joints, muscles, and soft tissues [12]. Although HA affects all racial and ethnic groups [3], severe HA (<1% of normal FVIII activity) [4] seems to affect a larger proportion of Korean patients [5]. Data from the Korean Hemophilia Foundation Registry reported that 68% of Korean patients have severe HA [5], in contrast to a prevalence range of ~35–55% for severe HA reported in other countries [56789].…”

Section: Introductionmentioning

confidence: 99%

Subgroup analysis of a phase 2/3 study of rurioctocog alfa pegol in patients with severe hemophilia A: efficacy and safety in previously treated Korean patients

et al. 2019

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BackgroundThe efficacy and safety of extended half-life, full-length, pegylated recombinant factor VIII rurioctocog alfa pegol [BAX 855, ADYNOVATE (USA)/ADYNOVI (Europe); Baxalta US Inc., a Takeda company, Lexington, MA, USA] was investigated in previously treated Korean patients with severe hemophilia A (HA).MethodsA post hoc data analysis from the international, multicenter, phase 2/3 PROLONG-ATE study of rurioctocog alfa pegol in patients with severe HA (NCT01736475) determined annualized bleeding rates (ABRs) and rates of adverse events (AEs) in Korean patients treated in this study.ResultsAll 10 enrolled Korean patients receiving rurioctocog alfa pegol (9 prophylaxis, 1 on-demand) completed the study [median (range) age, 28.0 (12–50) yr; weight, 64.8 (45–90) kg; 8 patients had ≥1 target joint at screening]. Median (range) ABR was 1.9 (0.0–14.5) for patients on prophylaxis and 62.2 for the patient receiving on-demand treatment. The hemostatic efficacy of rurioctocog alfa pegol was rated “excellent” or “good” and only single infusions were required per bleeding episode. ABRs improved in most patients compared with prestudy values. No dose adjustments were required for prophylaxis, and the dosing frequency was reduced in 8 patients, compared with their previous prophylaxis regimen. No serious AEs were reported; all 9 nonserious AEs (in 3 patients) were mild in severity and unrelated to the study treatment.ConclusionThis post hoc analysis of a small group of Korean patients with severe HA indicated that rurioctocog alfa pegol was effective, and no serious AEs were observed. For most patients, the dosing frequency was also reduced compared with their previous regimen.

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Korea hemophilia foundation registry trends 1991–2012: patient registry, demographics, health services utilization

Cited by 5 publications

References 8 publications

Direct Acting Antiviral Agents in Korean Patients with Chronic Hepatitis C and Hemophilia Who Are Treatment-Naïve or Treatment-Experienced

Direct Acting Antiviral Agents in Korean Patients with Chronic Hepatitis C and Hemophilia Who Are Treatment-Naïve or Treatment-Experienced

Epidemiology of Congenital Bleeding Disorders: a Nationwide Population-based Korean Study

Subgroup analysis of a phase 2/3 study of rurioctocog alfa pegol in patients with severe hemophilia A: efficacy and safety in previously treated Korean patients

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