Publications

Scholarly Journals--Published

• Guarino S, Jain A, Madisetti M, Rivlin KA, Desai PC, Kanter J, Lanzkron S, Manwani DG. National Alliance of Sickle Cell Centers Consensus Standards for Transition to Adult Care in Sickle Cell Disease. Blood Adv. 2025 Jun 5:bloodadvances.2025015909. doi: 10.1182/bloodadvances.2025015909. Epub ahead of print. PMID: 40472332. Impact factor : 7.4  Sickle cell disease (SCD), an autosomal recessive hemoglobinopathy, affects approximately 100,000 people in the United States1. The process of transitioning from pediatric to adult SCD health care systems can be disjointed and poorly coordinated, contributing to the high morbidity and mortality seen in this population. There is no universally accepted definition of a successful SCD care transition or existing standards and recommendations for SCD clinicians. The National Alliance of Sickle Cell Centers (NASCC) uses a described modified Delphi process to reach consensus among its members, through which we defined standards and recommendations for transitioning care from pediatric to adult care health systems, including the definition of successful transfer and integration into adult care and the essential health data elements needed for a standardized EHR transition note to facilitate clinician communication. NASCC members from pediatric, adult and lifespan SCD centers evaluated standards and recommendations for successful transfer and integration of care as well as pediatric and adult transition program operating practices. Consensus was achieved for 4 Standards and 14 Recommendations for transition of pediatric to adult care in SCD in the areas of transition policies, documents, tracking, definitions of successful transfer and transition of care, and initial visit responsibilities. This initiative defines two key elements of successful transition, which will allow for the study of interventions to improve outcomes. Importantly, these materials now provide the needed framework and quantifiable metrics for clinicians to evaluate their transition programs for quality improvement. (07/2025) (link)
• Grismore C, Roberts LR, Lister ZD, Jain A, Silvestre J, Dickerson J, Montgomery SB. Barriers to Care for Adults With Sickle Cell Disease: A Qualitative Descriptive Study. Health Expect. 2025 Jun;28(3):e70310. doi: 10.1111/hex.70310. PMID: 40411281; PMCID: PMC12102609. Impact Factor : 3  Objective: We sought to understand barriers to care among adults with sickle cell disease (SCD) within our healthcare system. Study setting and design: This qualitative descriptive study was conducted as part of a needs and assets assessment in preparation for the development of an adult sickle cell clinic. Data sources and analytic sample: We conducted key informant interviews (n = 19) and a focus group (n = 10) with administrators, patients, caregivers and healthcare providers (HCPs). Audio recordings were transcribed verbatim, coded inductively and analysed thematically. Principle findings: Four themes emerged: (1) People with SCD identified structural barriers, such as the lack of individualised care, access barriers to medical, community, adult-specific resources and inadequate transitional care support from paediatric to adult care. (2) HCP-related barriers, which included a lack of understanding and education, communication gaps and access barriers to finding HCPs trained in caring for people with SCD. (3) Discrimination biases by HCPs and outright prejudice towards people with SCD. (4) Financial barriers such as lack of incentives for comprehensive SCD centres and HCPs and funding reimbursement. We found that adult people with SCD had unique challenges. Interestingly, patients had perspectives similar to HCPs, while administrators were more focused on the financial barriers that affect continuity of care. Conclusions: These barriers require a concerted and multidisciplinary effort from patients, caregivers, HCPs, administrators and the community. Patient or public contribution: Patients, caregivers and community members played a crucial role in this study by sharing their lived experiences and perspectives on barriers to care for adults with SCD. (06/2025) (link)
• Chanmany Pastor R, Roberts L, Jain A, Tamares S. The Heat Is On: Climate Change Implications for Pregnant Women with Sickle Cell Disease. Womens Health Rep (New Rochelle). 2025 Mar 24;6(1):286-292. doi: 10.1089/whr.2024.0146. PMID: 40308363; PMCID: PMC12040556. Sickle cell disease (SCD), a serious, chronic blood disorder is the most common genetic blood disease in the United States affecting 100,000 people and disproportionately affecting the African American population. Pregnancy is particularly risky for people with SCD due to higher risk of developing pregnancy-related complications compared with people without the disease. For African American pregnant women with SCD, the risk of maternal morbidity and mortality is up to 10 times higher. Physiological changes during pregnancy increase the risk of vaso-occlusive episodes (VOEs), acute chest syndrome, venous thromboembolic events, and infections. Dehydration increases risk as it triggers sickling of red blood cells, leading to painful VOEs and further increasing the risk of aforementioned complications. Climate change, observed since the mid-20th century, is evidenced by the increasing trend of global temperature, hurricanes, floods, and heat waves. Climate changes can profoundly impact people with SCD, as elevated temperatures result in increased core body temperatures, blood hyperosmolality, and dehydration. Assisted by a research librarian, a literature search was undertaken of major databases (PubMed, Embase, and Google Scholar), with delimiters of publication between 2019 and 2024 and human subjects, and 477 studies were retrieved. After meticulous screening, 20 relevant articles were analyzed. Evidence linking climate change impact to increased risk for pregnant people with SCD is lacking. Further research is needed to examine the phenomenon and mitigate this unique risk of climate change. SCD clinical guidelines stress the importance of preventing dehydration. Clinicians play a critical role in educating this vulnerable population about risks, including dehydration and exposure to extreme heat. (05/2025) (link)
• Akshat Jain, Rabindra Kumar Jena, Tuphan Kanti Dolai, Priyaleela Thota, Exploring Advances in Point-ofCare Diagnosis: Microchip Electrophoresis for Hemoglobinopathy Detection in Indian Populations, Blood (Impact factor 21.1) Volume 144,2024, Page 3621, ISSN 0006-4971 Introduction: Sickle cell anemia and thalassemia are the most prevalent inherited hemoglobinopathies globally. A point mutation in the beta-globin gene causes sickle cell disease, characterized by defective hemoglobin, severe anemia, and vaso-occlusion. A different mutation in the same gene reduces hemoglobin production, leading to beta-thalassemia with anemia, iron overload, and organ damage. C (HbC) and Hemoglobin E (HbE) are fewer common variants caused by mutations in the beta-globin gene. Approximately 7% of the world population is estimated to be carriers of such disorders and 3,00,000 - 4,00,000 babies are born every year with such diseases. About 15% of all SCD newborns worldwide are from India. Also, 10,000-15,000 babies are born with Thalassemia Major every year in the country. Early screening and identification of carriers and at prenatal stages can prevent the birth of affected offspring. The World Health Organization (WHO) estimates that early diagnosis and intervention could prevent 70% of Sickle Cell Disease (SCD) deaths with penicillin, hydroxyurea. However, in low middle income countries (LMIC) like sub-Saharan Africa and India, lack of awareness and accessibility of the diagnostic tools are the hurdles to universal screening and prevention strategies for SCD. High-Performance Liquid Chromatography (HPLC) is a widely used technology for the detection of abnormal hemoglobin variants and employed by income-rich countries as a confirmatory test. However, the small-scale laboratories in LMIC cannot often bear the cost and expertise to reliably scale up this testing especially in rural and tribal settings such as in India. GazelleTM is a cartridge-based microchip capillary electrophoresis technology with a portable, affordable reader system with cloud interface. This system allows real-time tracking and quantitative analysis of hemoglobin variants with a finger /heel prick, or venous blood sample, and is completed in less than ten minutes, providing results during the patient's visit. Methods: The current study was conducted for the detection of abnormal hemoglobin variants using HPLC and microchip electrophoresis technology in two states estimated to have the highest prevalence of SCD in India. Results: A total of 77 blood samples were processed for population surveillance in these previously unscreened regions and corroborated with HPLC. Out of 37 samples from Odisha, 32 were diagnosed with hemoglobinopathies where 14 cases had sickle cell disease, 7 cases with sickle cell trait, 6 cases with β-thalassemia trait, 4 were diagnosed as β-thalassemia major, and 1 case of HbE disease. Out of 44 samples from West Bengal, 32 were diagnosed with hemoglobinopathies. Among them, 1 case of β-thalassemia major, 8 cases of β-thalassemia trait, 3 cases of HbE disease, 7 cases of HbE trait, 1 case of sickle beta disease, 2 cases of sickle cell anemia (SCA) disease, 1 case of sickle cell trait and 8 cases of HbE β-thalassemia were observed. The results showed 99% concordance for both the testing methods. When compared to HPLC, microchip capillary electrophoresis showed 100% sensitivity, specificity, and accuracy for controls vs disease; 96% sensitivity, 97.78% specificity and 97.14% accuracy for disease vs trait; and 96.55% sensitivity, 97.56% specificity and 97.14% accuracy for trait vs disease (p =0.016). Conclusion: Our study in a global health LMIC setting demonstrates that the microchip electrophoresis-based technology enables affordable and easy identification of common Hb variants with excellent accuracy in the field at the point of need with the same accuracy as HPLC. It is a adaptable platform for accurate diagnostic testing of SCDs and other hemoglobinopathies in low-resource regions where reliable electricity, lack of trained manpower and high cost are always prohibitive for phlebotomy-based community screening and SCD testing. (12/2024) (link)
• A New Diagnostic Method for Premarital Screening of Thalassemia and Hemoglobinopathies: Microchip Electrophoresis (Gazelle)Method, Duran Canatan, Serpil Delibas, Emel Altunsoy, Priyaleela Thota, Akshat Jain, Umut Gurkan,Blood, Volume 144,2024,Page 1094,ISSN 0006-4971,https://doi.org/10.1182/blood-2024- 209167 (12/2024) (link)
• Transformative Therapies for Sickle Cell Disease: A Global Stakeholder Perception Study on Advanced Cell Therapies ;Akshat Jain, Hisham Abdel-Azim https://doi.org/10.1182/blood-2024-205335 Impact Factor 21.1 Sickle cell disease (SCD) is a global genetic blood disorder most prevalent in people of African and Indian ancestry with an estimated 750 million patients worldwide. Recent advancements in transformative therapies (TT), such as stem cell transplantation (HSCT) and gene therapy (GT)offer hope for disease mitigation. A definitive framework for patient selection and provider preference has yet to be established. This is the first global study conducted to explore healthcare providers (HCPs) perceptions of these transformative therapies and how it may impact patient selection for such arduous but promising treatment options. (12/2024) (link)
• Akshat Jain, Safiye Sahin, Lisa Roberts; Assessing Knowledge, Awareness, and Access to Care Barriers for People with Sickle Cell Disease: A Cross-Sectional Global Pilot Study, Blood, Volume 144,2024, Page 7666, Impact Factor 21.1  Blood 144(Supplement 1):7666-7666; DOI:10.1182/blood-2024-206493 Sickle cell disease (SCD) is the most prevalent hemoglobinopathy worldwide that leads to Vaso occlusive pain crises, short- and long-term organ toxicity greatly affecting the quality of life (QOL). A truly global hemoglobinopathy SCD is especially prevalent in sub-Saharan Africa, India, and the middle-east. Due to global population migration sizable SCD populations are found in Europe, the Americas, and Australasia. The objective of this study was to understand global demographic, access to care barrier, knowledge gap and health care utilization trends in patients and caregivers affected by SCD. Methods: We instituted a comprehensive survey instrument incorporating elements from internationally validated tools WHOQOL (World Health Organization Quality of Life),Sickle Cell Quality of Life Measurement Information System (ASCQ-Me),health-related quality of life (HRQoL) across 11 countries with the highest global SCD prevalence across six continents. These countries included Malawi, Nigeria, Uganda, Zambia, India, United Arab Emirates, Belize, Trinidad, and Tobago, United States, Australia, and the United Kingdom. The survey captured a wide-ranging set of demographic data including age at diagnosis, household income, internet/mobile phone connection, smartphone use, among others and SCD specific questions eg. access to genetic counselling, stroke screening, hydroxyurea use, SCD complications among others. Data was collected February to June 2024 and analysed using descriptive statistics. Continuous variables, like age, are represented as the mean ± standard deviation (SD), while categorical variables are shown as counts and percentages (n (%). Results: 110 participant responses until the time of this submission were analysed. Mean age was 24.06 years (SD = 11.56, range 1- 60). Most respondents were self-reporting (70.9%), female (64.5%), and from Zambia (41.8%). Access to a smart phone with applications was reported by 87.3% of participants. Only 18.2% had insurance coverage for all SCD-related costs, 62.7% depend on government healthcare. The most common SCD genotype among respondents was SS (54.5%), with others including SC (3.6%) and S Beta Thalassemia (9.1%). The majority (59.1%) indicated that both parents had SCD, but some (21.8%) did not know their parents' status.87.3% of participants understood that SCD is a familial/genetic disorder, while 10.3% did not. A significant majority (98.2%) knew that SCD is a lifelong condition, although 0.9% believed it only lasts through childhood, and another 0.9% were unsure. When asked about the prevention of future trait transition, the majority (71.8%) demonstrated an understanding. Awareness levels revealed that 60.9% of respondents knew that SCD can be cured, and 67.3% were aware of stem cell transplant options. Regarding support groups or assistance from organizations, 50.9% of participants were aware, while 48.6% were not. Most respondents (69.1%) received genetic counselling, but access to mental health services was significantly lower, with only 15.5% having received such care. Discussion: The findings from this study highlight significant gaps in knowledge and access to care among individuals affected by SCD. Despite the high level of understanding regarding the genetic nature and lifelong aspect of SCD, considerable population globally lack critical information about prevention and available treatments. The disparity in awareness about cure options and support services further underscores the need for targeted educational interventions. Unmet needs stemming from lack of insurance coverage for SCD-related costs and limited access to mental health services points to systemic barriers that hinder the overall QOL. Addressing these gaps through comprehensive healthcare policies focusing on improved access to mental health and genetic/pre-marital counselling is as essential in the developing world as it is an unmet need in low-income households of developed nations. This study provides a foundational understanding that can guide future research and policymaking, ultimately aiming to enhance the QOL for patients with SCD globally. Ongoing work on this project would allow the investigators to assess these global trends deeply and with a larger sample size able to compare differences in these outcomes among high- and low-income countries. (11/2024) (link)
• Usability Evaluation of a Point-of-Care Diagnostic Test in the Diagnosis of Sickle Cell Disease and Other Hemoglobinopathies,Rabindra Kumar Jena, Duran Canatan, Akshat Jain, Priyaleela Thota, Umut Gurkan, Blood ( Impact factor 21.1 ) Volume 144, Supplement 1, 2024, Page 7545, ISSN 0006-4971, https://doi.org/10.1182/blood-2024-210542. (https://www.sciencedirect.com/science/article/pii/S0006497124103709) Abstract: Sickle cell disease (SCD) is a common and life-threatening hematological disorder1. It is characterized by a mutation in the beta-globin gene resulting in the production of abnormal hemoglobin called hemoglobin S. Under low-oxygen conditions, hemoglobin S polymerizes, forming sickle-shaped rigid cells which can lead to, anemia, painful episodes, organ damage, and in some cases death2,3. Early detection of SCD is essential for initiating appropriate interventions and reduce mortality. To this end, several methods have been developed to detect the SCD and the carrier states with high sensitivity and specificity. These methods include screening tests such as complete blood count, and sickling test, confirmatory tests such as hemoglobin separation techniques, and genetic tests4. Despite advances in detection of SCD, these methods are cost-prohibitive and need centralized labs and/or highly skilled personnel. Advanced portable point-of-care diagnostics can offer a low-cost, simple, and user-friendly method for detecting SCD. This abstract introduces a new simpler test for Sickle Cell Disease and Beta Thalassemia diagnosis that can reach more people. It removes the need for an experienced lab tech who can pipette allowing the test to be used much more widely. The test takes the existing Gazelle Hb Variant test and simplifies the process such as removing the need for pipetting and removes several steps requiring skill. The Gazelle Hb Variant test uses a miniaturized version of electrophoresis technology for hemoglobin variant detection5. In about 8 minutes, using a small patient sample, the Reader displays the result on the screen, including hemoglobin types and percentages and offer interpretative statements for possible conditions such as sickle cell disease and trait, and beta thalassemia5. Gazelle (current version) is being used in 35+ countries with promising results so far. Gazelle's performance is in concordance with the most commonly used laboratory methods such as HPLC in multiple clinical studies. When compared to HPLC, Gazelle showed 100% sensitivity and specificity for normal vs disease; 100% sensitivity and specificity for disease vs trait; and 100% sensitivity and 98.5% specificity for trait vs disease. The average Pearson correlation coefficient for hemoglobin quantification comparing Gazelle to HPLC is 97.1%. The new simple version of the cartridge (Gen 2) is a breakthrough invention that uses microfluidics to dramatically simplify sample preparation. Usability studies have been completed with 14 users of low skill level. This study seeks to assess how well end users, using the supplied training materials, can understand the workflow, successfully run the diagnostic, and understand test results. The assessment was done through a simple questionnaire which was designed to assess product usability against key technical product specifications. The Simplified cartridge proved to be much superior for non-lab users than the current test. It also emphasized the fact it is so much easier that average people, without any technical training, can take the test. Usability study showed the following results: - When compared to Gen 1, Simplified cartridge has fewer steps involved in sample preparation which reduced time significantly (~5min vs. 2min). - All the users were able to prepare the sample easily without any errors. - All the users noted that the product is very easy to use and that the process steps involved are easy to learn. - All the users completed the test successfully in two attempts or less. - All the users were able to complete the test successfully after reviewing the training video or the IFU once. The miniatured electrophoresis system is ideal for remote settings. It is rugged, small and no cold chain is necessary. It can work using a finger stick or heel prick of blood sample and has self-contained kits with all the sample preparation supplies needed. Gazelle with simplified cartridge is easy to use and an affordable tool for accurate diagnosis of sickle cell disease and other hemoglobinopathies especially in low resource settings. References: 1. Kato G.J et al. Nat. Rev. Dis. Primers. 2018;4:1-22. 2. Edelstein S.J et al. Proc. Natl. Acad. Sci. USA. 1973;70:1104-1107. 3. Lipowsky H.H et al. Microcirculation. 1997;4:289-301. 4. Da Fonseca S.F et al; Hematol.Hemoter. 2015;37:296-301. 5. Hasan MN et al. Analyst. 2020 Apr 7;145(7):2525-2542. (11/2024) (link)
• Designing and Implementing a Standardized Electronic Health Record (EHR) Template for Transition of Care in Sickle Cell Disease (SCD), Blood, Volume 144,2024, Page 7548, ISSN 0006-4971 Sickle cell disease (SCD) is the most common inherited hemoglobinopathy, affecting approximately 100,000 people in the United States. Causing a variety of acute and chronic complications across the lifespan, individuals with SCD require complex care coordination across many facets of the health care system. During the period of transition between health care systems, patients are particularly vulnerable to increased morbidity and complications due to fractured care and inadequate transfer of information. Electronic health records (EHR) systems can be used to improve adherence to guideline-based care in chronic conditions, like Down syndrome, but require programming and implementation by each individual health system in their specific EHR. Additionally, without a standardized set of elements to be included in a transition of care summary, vital information in the medical record may be lost. The National Alliance of Sickle Cell Centers (NASCC) recently defined the essential elements to be included in a transition summary for patients with SCD through a modified Delphi consensus initiative. This project then used these elements to create an SCD-specific template in 2 commercially available EHRs and implemented the template into clinical use. (11/2024) (link)
• Akshat Jain, Lisa Roberts, Safiye Sahin, Global Sickle Cell Quality of Life: Oral Pain Medication Frequency, Health Outcomes, and Emotional WellBeing, Blood, Volume 144, 2024, Page 5060, ISSN 0006-4971 Sickle cell disease (SCD) profoundly affects physical health, emotional well-being, and overall quality of life(QOL). Oral pain medication (OPM) use is essential to manage vaso occlusion in SCD and is a key utilization metric for disease severity and management effectiveness. Understanding how this frequency relates with health status, treatment practices, and psychosocial factors may explain unmet needs in these regions and help direct public policy. We investigated the relationships between frequency of OPM usage and key physical, psychosocial health metrics, and satisfaction with medical care among people with SCD (PWSCD) globally. (11/2024) (link)
•  Alissa R. Kahn et al.,COVID-19 Disease in Children with ALL Receiving Maintenance Therapy: Do Not Discount the Risk. JCO Oncol Pract 20, 1655-1662(2024). DOI:10.1200/OP.23.00631 Impact Factor 4.7 Unlike most childhood cancers, therapy for ALL includes a prolonged maintenance phase during which children typically resume regular activities. Physicians need data regarding the persistent impact of COVID-19 in this population to help guide families after the pandemic. Methods The Pediatric Oncology COVID-19 Case Report (POCC) collects deidentified data (sociodemographics, clinical data [cancer, COVID-19 course]) on children, adolescents, and young adults with cancer and COVID-19 from 104 US pediatric oncology institutions. The analysis presented here compares children (≤21 years) with ALL in maintenance (ALL-MTN) with all other children with cancer and COVID-19. Multivariable analyses adjust for age, race/ethnicity, insurance, absolute neutrophil count at the time of infection, vaccination, and comorbidities. Results Compared with other children reported to POCC (n = 1,190), those in ALL-MTN (n = 481) were less often hospitalized (23% v 29%, P = .01) or admitted to the intensive care unit (ICU: 3% v 5%, P = .01); these findings persisted in multivariable analysis (hospitalization: odds ratio [OR], 0.7 [95% CI, 0.6 to 0.9]; ICU: OR, 0.5 [95% CI, 0.2 to 0.8]). However, cancer-directed therapy was changed more often for children in ALL-MTN (50% v 33%, P ≤ .01; OR, 2.0 [95% CI, 1.6 to 2.5[). Vaccination was an independent prognostic factor in our multivariable model, decreasing odds of hospitalization (OR, 0.7 [95% CI, 0.5 to 0.9]). Conclusion Children in ALL-MTN required fewer hospitalizations and ICU admissions but more therapy modifications than other children  (08/2024) (link)
• Adolescents and young adults with cancer: the clinical course of COVID-19 infections; Journal of the National Cancer Institute,2024 Wolfson, J.A.; Davis, E.S.; Saha, A.; Martinez, I.; McCall, D.; Kothari, P.; Brackett, J.; Jain A. Dickens, D.S.; Kahn, A.R.; Schwalm, C. et al.; DOI: 10.1093/jnci/djae085; EID:2-s2.0- 85201029933; Part of ISSN: 14602105 00278874   Impact factor : 9.9 Adolescents and young adults (ie, individuals aged 15-39 years, known as AYAs) with cancer face unique vulnerabilities yet remain underrepresented in clinical trials, including adult registries of COVID-19 in cancer (AYAs: 8%-12%). We used the Pediatric Oncology COVID-19 Case Report to examine the clinical course of COVID-19 among AYAs with cancer. The Pediatric Oncology COVID-19 Case Report collects deidentified clinical and sociodemographic data regarding individuals aged from birth to 39 years with cancer (37%) and COVID-19 from more than 100 institutions. Between April 1, 2020, and November 28, 2023, 191 older AYAs (individuals 22-39 years of age) and 640 younger AYAs (individuals 15-21 years of age) were captured. Older AYAs were less often hospitalized (P < .001), admitted to the intensive care unit (P = .02), and required respiratory support (P = .057). In multivariable analyses, older AYAs faced 80% lower odds of intensive care unit admission but 2.3-times greater odds of changes to cancer-directed therapy. Unvaccinated patients had 5.4-times higher odds of intensive care unit admission. Among AYAs with cancer, the COVID-19 course varies by age. These findings can inform oncology teams directing COVID-19 management and prevention in AYA patients with cancer. (08/2024)
• The Heat Is On: Climate Change Implications for Pregnant Women with Sickle Cell Disease. Women’s Health Rep (New Rochelle). 2025 Mar 24;6(1):286-292. doi: 10.1089/whr.2024.0146. PMID: 40308363; PMCID: PMC12040556. Sickle cell disease (SCD), a serious, chronic blood disorder is the most common genetic blood disease in the United States affecting 100,000 people and disproportionately affecting the African American population. Pregnancy is particularly risky for people with SCD due to higher risk of developing pregnancy-related complications compared with people without the disease. For African American pregnant women with SCD, the risk of maternal morbidity and mortality is up to 10 times higher. Physiological changes during pregnancy increase the risk of vaso-occlusive episodes (VOEs), acute chest syndrome, venous thromboembolic events, and infections. Dehydration increases risk as it triggers sickling of red blood cells, leading to painful VOEs and further increasing the risk of aforementioned complications. Climate change, observed since the mid-20th century, is evidenced by the increasing trend of global temperature, hurricanes, floods, and heat waves. Climate changes can profoundly impact people with SCD, as elevated temperatures result in increased core body temperatures, blood hyperosmolality, and dehydration. Assisted by a research librarian, a literature search was undertaken of major databases (PubMed, Embase, and Google Scholar), with delimiters of publication between 2019 and 2024 and human subjects, and 477 studies were retrieved. After meticulous screening, 20 relevant articles were analyzed. Evidence linking climate change impact to increased risk for pregnant people with SCD is lacking. Further research is needed to examine the phenomenon and mitigate this unique risk of climate change. SCD clinical guidelines stress the importance of preventing dehydration. Clinicians play a critical role in educating this vulnerable population about risks, including dehydration and exposure to extreme heat. (06/2024) (link)
• Akshat Jain, Parthiv V Sheth, Laboratory and Bleeding Frequency Changes in Pediatric Patients after Transitioning from Factor VIII to Emicizumab Prophylaxis -Real World Evidence in Patients with Severe Hemophilia A   Blood, Volume 142, Supplement 1, 2023, Page 5491, ISSN 0006-4971 (12/2023)
• Akshat Jain, Reactivation of factor 8 inhibitor on Emicizumab prophylaxis in a previously tolerized patient, Research and Practice in Thrombosis and Haemostasis, Volume 7, Supplement 1,2023,100235, ISSN 2475-0379 (11/2023) (link)
• Jain Akshat, Patel A, Winters T; A Rare Report of the Coexistence of Sickle Cell Disease, Neurofibromatosis Type 1, and Intracranial Hypertension in a Pediatric Patient; Journal of Pediatric Hematology/Oncology   Patel, Amie DO*; Winter, Timothy DO†; Jain, Akshat MD*,‡. A Rare Report of the Coexistence of Sickle Cell Disease, Neurofibromatosis Type 1, and Intracranial Hypertension in a Pediatric Patient. Journal of Pediatric Hematology/Oncology 45(3):p 155-158, April 2023. | DOI: 10.1097/MPH.0000000000002647 (04/2023)
• SARS-CoV-2 in Childhood Cancer in 2020: A Disease of Disparities. Journal of Clinical Oncology Johnston EE, Martinez I, Davis ES, Caudill C, Richman J, Brackett J, Dickens DS, Kahn A, Schwalm C, Sharma A, Patel PA, Bhatia S, Levine JM, Wolfson JA; POCC Consortium( Jain Akshat etal.).  (12/2021) (link)
• Impact of COVID 19 Pandemic on Health Care Utilization for Patients with Sickle Cell Disease-a Specialty Treatment Center Experience Starting in March 2020, the coronavirus 19 disease (COVID-19) pandemic affected the United States (US) health care system. Many individuals were afraid to seek medical care due to fear of obtaining COVID-19; therefore, there was a high frequency of adults forgoing medical care. Chronic conditions including diabetes, COPD, mental health, and HTN outcomes worsened due to decrease in routine care during the pandemic. Sickle cell disease (SCD) is a chronic blood disorder that causes numerous complications including but not limited to vaso-occlusive crisis, strokes, and chronic kidney disease. Individuals who have routine follow up with a hematologist have been shown to have decreased hospitalizations, ER visits, length of stay, and opiate usage. (11/2021) (link)
• Sickle Cell Disease with Dermatomyositis-a Rare and Complex Comorbidity https://ashpublications.org/blood/article/138/Supplement%201/4174/477662 (11/2021) (link)
• Jain A., Establishing Cost effective strategies for predicting outcomes of Pediatric leukemia’s. Jain A., Establishing Cost effective strategies for predicting outcomes of Pediatric leukemia’s.; Journal of Pediatric Hematology Oncology; JPHO-20-209, Invited Editorial. (05/2020) (link)
• Challenges in Management of Severe Hemophilia with Acute Hematologic Malignancies (10/2019)
• Editorial : Oxidant Health in Sickle Cell Disease The understanding of the role that hypoxic injury , endothelial dysfunction , cellular activation play in the evolution of a sickle cell disease will start with validating a scientific instrument to measure such markers in the human body accurately. Editorial discusses the current knowledge of the issue in literature and the proposed interventions to ameliorate it as a potential etiology for Sickle Cell Disease Crisis .  (09/2018) (link)

Scholarly Journals--Accepted

• Hereditary hypofibrinogenemia: A rare cause of chronic liver disease; Journal of Pediatric Gastroenterology and Nutrition  DOI: 10.1002/jpr3.70058   (07/2025) (link)
• Global Disparities in Knowledge, Awareness, and Access to Care for Sickle Cell Disease: A Cross-Sectional Study of Low-Middle vs. High Income Countries : Jain A, Roberts L, Sahin S; JSCD-2025-015.R2; Oxford University Press A cross-sectional survey with 127 participants was conducted in 11 countries across multiple global regions between February and September in 2024. Data were collected through surveys including questions from various scales such as Short Form Health Survey-36 (SF-36). Data were analyzed through descriptive statistics, chi-square tests, and Spearman’s rank correlation analysis, using SPSS (version 29) with a significance level of p < 0.05. The study underscores the urgent need for comprehensive healthcare strategies, including expanded newborn screening, improved financial support, and enhanced mental health services, particularly in low-middle income countries. (06/2025)
• Phase 3 Study of the Efficacy, Pharmacokinetics, Immunogenicity and Safety of von Willebrand Factor/Factor VIII Concentrate in Patients with Severe von Willebrand Disease under 6 Years of Age.  International Society of Hemostasis & Thrombosis , RPTH journal June 2023 (07/2023)
• Jain A; Reactivation of factor 8 inhibitor on emicizumab prophylaxis in a previously tolerized patient; HTRS 2023 Scientific Symposium Orlando 3/2023; Research and Practice in Thrombosis and Hemostasis 3/2023 in press. (03/2023)

Book Review - Scholarly Journals--Published

• 2025 Advanced Therapies Report Revolutionizing patient care: the promise and potential of cell and gene therapies.   (06/2025) (link)
• Foreward to the Book : The Many Faces and Lives of Sickle Cell - A Global Collaboration Hardcover . ISBN-10 ‏ : ‎ 0645413429 ISBN-13 ‏ : ‎ 978-0645413427 (06/2022)

Abstract

• Gray, Austin L. MD*; Liu, Yan MD, PhD*; Wappler-Guzzetta, Edina A. MD, PhD*; Cherukuri, Durga PhD*; Wang, Jun MD*; Jain, Akshat MD†. Case Report of a Myeloid Neoplasm with Pathogenic Germline Variant in DDX41 and Constitutional inv (7) (q11.2q22) Along with JAK2 Pathogenic Variant in a 9-Year-Old Patient Who Presented With Features of Essential Thrombocythemia. Journal of Pediatric Hematology/Oncology ():10.1097/MPH. 02681, May 22, 2023. | DOI: 10.1097/MPH. 02681 (06/2023)
• JAMA oncology   Martin SD, Davis ES, Dai C, Jain A (POCC COVID consortium) et al. Clinical Features and Risk Factors Associated with Multisystem Inflammatory Syndrome in Children with Cancer and COVID-19. JAMA Oncol. Published online May 11, 2023. doi:10.1001 Martin SD, Davis ES, Dai C, Jain A (POCC COVID consortium) et al. Clinical Features and Risk Factors Associated with Multisystem Inflammatory Syndrome in Children with Cancer and COVID-19. JAMA Oncol. Published online May 11, 2023. doi:10.1001/JAMA oncology.2023.0525 (05/2023)
• Patrick Zacharais, Latika Puri, Akshat Jain; Hematological Alterations in Patients of Multisystem Inflammatory Syndrome in Children (MIS-C) a Risk Prediction Analysis Based on a Single Center Experience. American Academy of Pediatrics NCE 2022, 10/22. (10/2022)
• Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India - Results of a Global Partnership Global Hematology & Oncology  Blood (2016) 128 (22): 3587. (12/2016) (link)
• Non-Myeloablative Conditioning Targeting Host Immunosuppression Is Successful in Matched Sibling Donor Stem Cell Transplantation for Hemoglobinopathies in Children Blood (2014) 124 (21): 3873. (08/2014) (link)

Books and Chapters

• Textbook: Thalassemia Updates and Novel Developments ISBN: 978-1-83969-158-4, Print ISBN: 978-1-83969-157-7, eBook (PDF) ISBN: 978-1-83969-159-1, 2020 (10/2021)
• Thrombocytopenia of Childhood; Monograph on Platelet disorders Authors Akshat Jain, James Bussel     Book : Textbook of the Indian College of Physicians(ICP) /Association of Physicians of India ( API ) (07/2015) (link)

Non-Scholarly Journals

• Childhood Covid-19 illness – Early detection is the key. This pandemic has confined people everywhere to the indoors to control keep the virus from spreading. Older adults have been the most commonly affected age group by the virus, but more recently a strange presentation of Covid-19 has been seen in children. New York City reported 15 similar cases between April 16 and May 4 for the first time in the United States. The state health officials were investigating 102 cases as of May 12. Multiple reports Thereafter, other US states and other countries reported similar symptoms and presentations in children who also were testing positive for Covid. It mirrors the presentation of a dramatic disease of children, called Kawasaki Disease, wherein the body goes into an overdrive leading to over-activation of inflammation. This new disease has been called  Multisystem inflammatory syndrome in children (MIS-C) and the CDC recently issued guidance to diagnose children with MIS-C if they have, Age <21 years with fever, laboratory evidence of inflammation and evidence of clinically severe illness requiring hospitalization with multisystem (>2) organ involvement (cardiac, renal, respiratory, hematologic, gastrointestinal, dermatologic or neurological); and No alternative plausible diagnoses; and Positive for current or recent SARS-CoV-2 infection by reverse-transcriptase polymerase chain reaction, serology or antigen test; or COVID-19 exposure within the four weeks prior to the onset of symptoms.   Simply put, if a child develops high grade fever (100.4 degree F or higher), fever, a rash, swollen hands and feet, red eyes, swollen lymph nodes and red, swollen or cracked lips, mouth, throat and tongue etc., immediate help with the pediatrician / family doctor should be sought to identify the case and early treatment leads to full recovery in children in most cases. Delay can lead to life-threatening cardiac complications. Treatment with medications called as Immunoglobulins and supportive care in a hospital setting is needed. (05/2020) (link)

Scholarly Journals--Submitted

• Inflammatory “Endotheliopathy’ with COVID 19 infections in children, unanswered questions for management post recovery. THE LANCET -Jain A., Soneji M.; Inflammatory “Endotheliopathy’ with COVID 19 infections in children, unanswered questions for management post recovery. Lancet May 2020 :THELANCET-D-20-11039 (05/2020) (link)

Online Publications

• Global Hematology - A Levelled Playing field  Speical Feature for American Society of Pediatric Hematology Oncology , invited Editorial : A review of Care Delivery and Challenges that face the world and patients with Hemoglobinopathies , Anemia , bleeding disoreders amongst other lifelong chronic disesaes that are a major cost for health delivery globally .  Exchange of information to initiate capacity building, care coordination, and jointresearch has the potential to ameliorate the challenge of access to specializedcare globally. It is most fitting to the field of benign hematology especially giventhe disparity in patient to practitioner ratio in resource limited settings. The wideavailability of mobile devices and internet access even in the remotest areas ofthe world provides a unique opportunity to coordinate care and provideemergency access to patients globally. (06/2018)