Manthanathu Joseph John

Introduction: National registries are essential infrastructure for haemophilia and allied bleeding disorders, but registry development and international alignment across the Asia–Pacific region remain unclear. Aim: To evaluate the availability, governance, technical infrastructure, international engagement, and patient‐facing digital functions of national haemophilia registries across the Asia–Pacific region. Methods: The AHAD‐AP Registry Committee conducted a structured survey of Country/Region/Territory (CRT) representatives. The questionnaire assessed registry status, funding and governance, international alignment, technical infrastructure, data‐entry methods, and digital functions. Multiple responses from the same CRT were harmonized when needed. Results: Nineteen individual responses representing 15 CRTs were consolidated into 15 CRT‐level responses. Ten CRTs reported an active national registry, one a planned registry, three no national registry, of which two had centres participating in World Bleeding Disorders Registry (WBDR), and one hospital‐based registry. Haemophilia was included in all, while VWD and other inherited coagulation factor deficiencies were included in 11 of 12. Mandatory registration was reported by 5 CRTs. Funding and governance structures varied across CRTs. Awareness of WBDR was reported by 12 of 15 CRTs, while dataset alignment, data submission, and technical integration were reported by 8, 4, and 1 CRTs, respectively. Manual data entry remained common (9/12), and patient‐oriented digital functions, including infusion logs or related support tools, were reported by 10 of 12 registries. Conclusion: This survey represents the first large regional assessments of national haemophilia registry infrastructure across the Asia–Pacific region. Harmonized datasets, sustainable governance, technical integration, and patient‐facing digital tools may support future registry development.

Introduction: Haemophilia is a bleeding disorder with implications beyond clinical symptoms, affecting patients' and caregivers’ personal, social, and economic well‐being and quality of life. Limited data exist from low‐ and middle‐income countries like India, where access to care and societal awareness may differ significantly from high‐income settings. We aimed to explore the personal, social, and economic impacts of haemophilia on persons with haemophilia (PwH) and their caregivers in India, using a mixed‐method approach. Methods: This multicentric, mixed‐method study included semi‐structured in‐depth interviews with 30 participants (15 PwH A – (Non‐inhibitor) and 15 caregivers). Transcribed interviews were analysed using grounded theory, and participants also completed the EQ‐5D‐5L and EQ‐VAS instruments. Data were analysed using descriptive statistics and thematic analysis to identify key burden areas Results: Ten themes emerged, including PwH‐specific (chronic pain, disrupted education/employment, strained relationships), caregiver‐specific (coping with diagnosis, social isolation), and shared challenges (financial burden, stigma, limited treatment access). The grounded theory of Transformative Resilience described coping strategies of PwH and caregivers. EQ‐5D‐5L showed greatest impairment in mobility (2.47 ± 0.92), with mean utility and VAS scores of 0.678 ± 0.280 and 0.630 ± 0.206, indicating moderate‐to‐severe QoL compromise. Conclusion: Haemophilia profoundly affects patients and caregivers, extending beyond physical symptoms to social, emotional, and economic challenges. The study underscores unmet needs arising from financial burden, stigma, and limited resources, emphasizing the need for patient‐centred, holistic care models that integrate medical, psychosocial, and economic support in resource‐limited settings.

Background: Haemophilia care varies across economic settings, influencing diagnosis, treatment and outcomes. The World Bleeding Disorders Registry (WBDR) enables standardized, patient‐level global benchmarking. We present the first multicentre analysis of Indian persons with haemophilia (PwH) in the WBDR, enabling robust benchmarking against regional and income‐stratified global cohorts. Methods: This cross‐sectional study analysed de‐identified WBDR data from six haemophilia treatment centres in India across geographic areas. Standardized demographic, clinical, and treatment indicators were benchmarked against South‐East Asia (SEA), income‐stratified global WBDR cohorts, and World Federation of Hemophilia Annual Global Survey (WFH AGS) 2023 data, focusing on diagnosis, severity, treatment, functional status, inhibitor status and employment. Results: Among 1,780 PwH (86% haemophilia A), 77% had severe disease. Median age was 20 years (IQR 11–31), significantly younger than global WBDR and AGS cohorts ( p < 0.001). Median age at diagnosis for severe haemophilia was 60 months (IQR 12180), markedly later than in upper‐middle‐ and high‐income countries ( p < 10 ^{− 1 5} ). Only 7% of severe PwH received prophylaxis compared with >60% in high‐income settings, higher ABR (median 6 vs 01) and greater target‐joint prevalence (31% vs 9%; p < 0.001). Among adults, 62% were employed, comparable to other lower‐middle‐income countries. Inhibitor surveillance was limited: 2% of severe PwH were tested in the prior 12 months, while lifetime inhibitor prevalence was 14%, similar to regional LMIC cohorts. Conclusions: Indian WBDR data underscore the value of registry participation for meaningful benchmarking of haemophilia care, highlighting progress in diagnosis and employment outcomes alongside clear opportunities to expand treatment coverage and improve clinical outcomes.

Background: Mucocutaneous manifestations are common in hematological malignancies, but are generally misinterpreted. About two-thirds of the patients with hematological malignancies have mucocutaneous manifestations. Specific manifestations include leukemia cutis, leukemic vasculitis, and mucosal hyperplasia. Non-specific manifestations include reactive dermatoses, infective dermatoses, and miscellaneous manifestations. Mucocutaneous manifestations help in depicting the course and prognosis of hematological malignancies. Aim and Objectives: To determine the frequency and pattern of mucocutaneous manifestations in patients with leukemia and lymphoma, and to determine the degree of correlation between various mucocutaneous manifestations and the types of leukemias and lymphomas. Patients and Methods: This cross-sectional study was conducted in hematology and dermatology outpatient and inpatient departments in a tertiary care center in North India for 18 months. The study included 177 newly diagnosed leukemia and lymphoma patients who had not undergone chemotherapy. Results: Mucocutaneous manifestations were noted in 87.57% of patients, with specific manifestations in 5.08% (gingival hyperplasia = 3.39%, leukemic vasculitis = 1.13%, leukemia cutis = 0.56%) and non-specific manifestations in 87.01% (reactive dermatoses = 4.52%, infective dermatoses = 30.5%, miscellaneous = 76.27%). Acute myeloid leukemia (AML) showed the highest frequency (96.88%) of mucocutaneous involvement. AML was significantly associated with pallor (P value P value P value = 0.023), and bacterial infections (P value = 0.028). Limitations: A small sample size and a cross-sectional design, that precluded the correlation between course of muco- cutaneous manifestations and disease progression. Conclusion: Mucocutaneous manifestations are common in acute leukemias, particularly myeloid lineage, due to bone-marrow suppression, immune dysregulation, and cutaneous spread. B-cell neoplasms show a higher propensity for skin involvement and paraneoplastic phenomena due to their aggressive nature compared to T-cell neoplasms.

Introduction: Haemophilia treatment centres (HTCs) coordinate multidisciplinary care, yet the European HTC standards on which global accreditation systems really do not reflect the wide resource gradient found in India. Aim: To assess HTC capacities across India and explore a tiered stratification model suited to diverse settings. Methods: A nationwide, self‑administered survey (February 2021–April 2022) was e‑mailed to all 291 HTCs registered with the Indian Association of Haemophilia and Allied Disorders. It captured infrastructure, laboratory capability and clinical services. Descriptive statistics and Spearman correlation were applied. Results: Ninety centres (30%) responded from 24 states/UTs. Only 34% fulfilled European HTC (EHTC) criteria and 11% met comprehensive‑care (EHCCC) criteria; 55% were unclassified despite providing haemophilia care. Laboratory‑to‑clinical functionality showed a moderate correlation ( r = 0.61, p < 0.001). Twenty‑seven percent of centres operated without an onsite coagulation laboratory, whereas 40% lacked full‑time nurses and 60% lacked multidisciplinary teams. Factor VIII/IX supplies were uninterrupted at 31% of sites; 38% offered prophylaxis to at least one patient. Conclusion: Rigid European categories mask the stepwise growth of Indian HTCs. A four‑tier model—anchored in predefined criteria for clinical and laboratory services could guide incremental upgrading while preserving patient safety.