Registry and Clinical Trial Seminars – Lagos & Maiduguri, Nigeria

Registry and Clinical Trial Seminars – Maiduguri, Nigeria

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Registry and Clinical Trial Seminars – Lagos, Nigeria

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Global Sickle Cell Disease Registry: The GANSID Takes A Giant Step Forward

The Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) unites patient organizations, healthcare providers, researchers, and partners to improve outcomes for individuals with inherited blood disorders. Focused on developing global registries, enhancing access to therapies, and promoting equity in care, GANSID empowers patient advocates and clinicians, strengthening capacity in low-medium resource countries. Through global collaboration, it is bridging gaps in healthcare and advancing research for millions worldwide. Registry, Clinical Trials Standardization, and Capacity Building On January 23, 2025, a hybrid in-person/virtual meeting held in Lagos, Nigeria, marked the commencement of a significant initiative by the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID). This gathering brought together key stakeholders to discuss the establishment of a Global Registry for Sickle Cell Disease (SCD) and related initiatives, signaling the first step in a long and ambitious journey to revolutionize SCD care worldwide. The Importance of a Global Registry Globally, there is no accurate data on the number of people living with SCD. Even in advanced healthcare settings like the United States, the available statistics are largely guesstimates. Dr. Donnell Ivy, a board member of the Sickle Cell Disease Association of America (SCDAA) and a leading voice in this initiative, emphasized that a comprehensive registry is essential for data-driven advocacy and improved patient outcomes. The Chief Medical Director of Lagos University Teaching Hospital (LUTH), Prof. Lanre Adeyemo, highlighted the gravity of the SCD burden in Nigeria, which accounts for 33% of the global prevalence. Prof. Adeyemo underscored the importance of data collection and registries in improving health outcomes, commending the small-scale registry already established in partnership with LUTH. GANSID’s Vision and Approach Prof. Adekunle Adekile, Chairman of GANSID’s Scientific Working Committee, outlined the organization’s vision of fostering global collaboration and addressing the gaps in SCD care, particularly in low-medium-resource countries. Prof. Adekile stressed that Nigeria must lead efforts to establish an accurate SCD registry, given its significant share of the global burden. He noted that until this is achieved, broader global efforts like the Global Sickle Cell Disease Network (GSCDN) would remain incomplete. Prof Adekile restated GANSID’s mentorship program and the organization’s plans for clinical trials site standardization. He pointed out that while 75% of newborns with hemoglobin disorders are in low-resource countries, less than 5% of clinical trial centers exist in these regions. This disparity raises questions about healthcare equity and highlights the need for capacity building in Africa. Patient Registry: Purpose, Benefits, and Challenges Prof. Titi Adeyemo provided an overview of the purpose, benefits, and challenges of patient registries, drawing from her experience with the Sickle Cell Disorder Registry in Nigeria (SCDRN), established in 2018. She emphasized the necessity of robust data systems to track patients, inform clinical care, and guide research. However, she acknowledged the challenges, including inadequate funding, limited healthcare infrastructure, and low awareness among healthcare professionals. Local and Global Collaboration Dr. Abosede Wellington, Desk Officer for SCD Programme, Lagos State Ministry of Health, reaffirmed Lagos State’s commitment to improving healthcare delivery. She outlined plans to establish newborn screening centers across Lagos State to issue cards showing hemoglobin status at birth, integrating SCD screening into immunization clinics. GANSID’s CEO Mrs. Lanre Tunji-Ajayi, MSM commended these efforts and emphasized the importance of collaboration between government agencies, clinicians and patient organizations. Advocacy and Leadership Among the speakers was Public Health Physician Dr. Annette Akinsete, CEO of the Sickle Cell Foundation Nigeria (SCFN) whom LUTH CMD, Prof. Lanre Adeyemo described as ‘the foremost advocate for SCD care in Nigeria’. Leading the largest sickle cell organization in Nigeria and one of the biggest globally, Dr. Akinsete commended GANSID for its remarkable understanding of the power of partnership and collaboration. ‘Partnerships like those fostered by GANSID are essential for making meaningful strides in SCD care, especially in countries bearing the highest burden,’ she stated. SCFN’s collaboration with GANSID underscores the critical role of working hand in hand tackling inherited blood disorders on a global scale.

‘Partnerships like those fostered by GANSID are essential for making meaningful strides in SCD care, especially in countries bearing the highest burden,’ – Dr. Annette Akinsete, CEO, Sickle Cell Foundation (NIgeria)

The Road Ahead The meeting concluded with remarks from Mrs. Tunji-Ajayi MSM, who called for sustained conversations and learnings to build a strong foundation for SCD care. She highlighted the need for Nigeria to take leadership in establishing an accurate registry and announced plans for similar meetings in major cities worldwide. Prof. Adekile reminded attendees that progress requires collective effort, noting that many healthcare professionals remain under-informed about SCD. Among the attendees were representatives from various SCD organizations in Lagos State, including Mrs. Bimpe Alowonle of Lagos State Public Schools Sickle Cell Club, Maureen Nwachi of the Sickle Cell Advocacy & Management Initiative (SAMI), and Anthony Osegbue of the Sickle Cell and Thalassemia Foundation. Other attendees included Dr. Ije Akinwumi, Dr. Olatinwo of Orilẹ Agege General Hospital and Retired Matron and health activist, Mrs. Theresa Onyejose. This historic meeting marked a pivotal step toward addressing the long-standing gaps in SCD care and research. GANSID’s initiative demonstrates the power of global partnerships in tackling inherited blood disorders, offering hope for millions of individuals worldwide. A similar hybrid meeting is scheduled to take place in Maiduguri, Borno State, Nigeria, with others slated for the rest of Africa, Asia, Europe, the Middle East and North and South America and Western Pacific.

About the GANSID

The Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) unites patient organizations, healthcare providers, researchers, and partners to improve outcomes for individuals with inherited blood disorders. Focused on developing global registries, enhancing access to therapies, and promoting equity in care, GANSID empowers patient advocates and clinicians, strengthening capacity in low-medium resource countries. Through global collaboration, it is bridging gaps in healthcare and advancing research for millions worldwide.

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Dr. Sophia Delicou

Shining Light on Clinicians Serving the Inherited Blood Disorders Community.

Introducing Dr. Sophia Delicou, a clinical hematologist and Head of the Thalassemia and Sickle Cell Unit - Expertise Center of Hemoglobinopathies and their Complications, Hippokrateio General Hospital Athens, Greece.

GANSID: What is your specialty, and why did you choose that specialty? Dr. Delicou: I first wanted to specialize in pediatric oncology, but hematology caught my attention throughout training. Hemoglobinopathies, which combine pathology, cardiology, endocrinology, and more, attracted my attention. This field of Hematology covers a wide range of medicine. Also, I build long-term relationships with patients, and I can see the difference in their lives over time. GANSID: Can you share a major challenge you have or currently encountering in your practice that may or may not be peculiar to your region or country Dr. Delicou: I am lucky to work in a well-run public hospital where my department is connected to all the specialists required for patient monitoring and continuity of care over the long term, but this is not the case across my country. Particularly, patients from the countryside encounter significant barriers because they frequently have to travel great distances for basic follow-up assessments. Periodic blood shortages for transfusion-dependent patients are another significant problem that causes a great deal of inconvenience, particularly in the summer. GANSID: How have you been able to overcome the challenge? Dr. Delicou: To solve these problems, our department has taken several actions. To minimize long-distance patient travel, we collaborate with local healthcare providers. This avoids the need for long-distance travel and allows remote follow-up and consultations. To reduce blood shortages, we promote blood donation through local campaigns and patient associations, especially in summer. We plan proactively and collaborate with blood bank services to manage blood inventory and prioritize transfusion-dependent patients. We cannot eliminate all challenges, but our efforts have helped our patients. GANSID: A successful clinical story you would like to share? Dr. Delicou: I think every patient is unique, and every improvement in their health is first their own success and, secondly, our success. It's the patients who successfully followed their iron chelation treatment, the women who made it to motherhood, and the patients who took a chance on clinical trials and improved with new treatments. I don't think I can talk about just one success story; it wouldn't be fair to the others. In this battle, everyone wins in their own way. GANSID: What advice do you have for fellow clinicians? Dr. Delicou: For every patient sitting in front of you, always remember that outside the clinic, at their home, someone is waiting for them. It could be their parents, partners, friends, or children —someone is there, waiting for them. Just as your own parents, friends, or partner are waiting for you. That’s why you must always do your best, just as you would want others to do for you and your loved ones. Medicine today provides numerous tools for diagnosis, monitoring, and learning. However, we must never forget empathy and our humanity.

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Roundtable at ASH

Roundtable at ASH 2023

Roundtable at ASH 2024

Pre-launch Consultation with Inherited Blood Disorders Organizations in Nigeria

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Roundtable at ASH 2024

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Angela Bilkhu

Angela Bilkhu joined Roche Canada in 2018 where she was a Senior Manager with the Federal Government Relations and Policy Team. She focused on delivering innovative strategies and plans that established a favourable policy environment for Roche’s pipeline specialty molecules. In this role, Angela worked to support policy and access priorities in rare diseases, oncology and neurosciences, building meaningful relationships with key stakeholders, including patients, caregivers and patient organizations to embed their voice into Roche Canada’s policy strategies and tools. In 2020, Angela joined the Global Patient Partnership Team to assume a newly created role focussed on patient-centric research and development activities in the solid tumour space. Angela worked closely with Roche-Genentech’s Product Development teams and the patient community to ensure Roche’s research and development activities are patient inclusive. In her free time, Angela loves to spend time with her husband, daughter and son travelling the world taking cooking classes so she can bring a little bit of each adventure back into their home.

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Andrea Trinidad-Echavez

Andrea Trinidad-Echavez is a woman with lived Von Willebrand disease (VWD) experience and founder of the Hemophilia Advocates-Philippines (HAP). Andrea is a leading voice in the Philippines promoting the awareness of bleeding disorders so that those who suffer from them would be given suitable and timely support which can be best institutionalized through legislation. She is a communication expert with more than 27 years of experience in journalism, international development, public relations, stakeholder relations, and advocacy work. She held various leadership positions for the past 19 years in small to medium enterprises and has a strong network with policymakers, chambers of commerce, and industry stakeholders.

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Janie Young Davis

Janie Young Davis is the Director, Global Patient Advocacy at Agios Pharmaceuticals. She is a proven pharmaceutical executive with 25+ years of experience. Previously, Janie has held numerous roles in biotechnology companies where she led commercialization and consulting engagements with life science companies for rare and ultra-rare diseases. Janie has expertise in patient advocacy, brand strategy and tactical execution, new product launches, lifecycle management, managing healthcare professional and patient audiences, sales and storytelling. Janie has a passion for advocacy and storytelling to empower patient communities. Having family members with sickle cell, she has a personal and professional connection for working with Warriors. In the last three years at Agios, she has worked with the SC community to continue to learn about their challenges, obstacles and achievements globally. Janie has an MBA and B.S. in Marketing from Purdue University. She is a mother of two –son, Jordan, a recent college graduate and sportswriter and a college-aged daughter, Devin.

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Dr. Martin Schulz

Dr. Martin Schulz currently serves as Global Medical Affairs Team Lead for Sickle Cell Disease at Pfizer Rare Disease. He has 15+ years of experience in the biopharmaceutical industry. This work has mainly focused on non-malignant hematologic conditions with a most recent focus on sickle cell disease. Martin is a registered pharmacist, holds a PhD in Pharmaceutics from Freie Universität Berlin and has published numerous peer-reviewed articles.

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Dr Gaurav Kharya

Dr Gaurav Kharya is a Clinical Lead Center for Bone Marrow Transplant and Cellular Therapy, Senior Consultant Pediatric Hematology Oncology and Immunology. He completed his graduation from Netaji Subash Chandra Bose Medical College, Jabalpur Madhya Pradesh. Following this he did his postgraduation DCH in Pediatric from Baba Raghav Das Medical College, Gorakhpur, UP. In year 2005 he joined his DNB in pediatric at Sir Ganga Ram Hospital, Delhi and completed his training in 2007. After completing his DNB pediatrics, he started working as a registrar in pediatrics at Chacha Nehru Bal Chikitsalya, Delhi. In 2009 he joined his fellowship in Pediatric hemato-oncology & BMT at Sir Ganga Ram Hospital which he completed in 2011. Soon after this he started working as a consultant in Pediatric Hematology Oncology, Immunology & BMT at Dr B L Kapur Memorial hospital where he was instrumental in starting pediatric hemato-oncology services and played a key role in taking the BMT programme to the next step. In September 2012 he moved to The Great north Children’s hospital, Newcastle upon tyne, United Kingdom to work as a fellow in pediatric hemato-oncology, immunology & bone marrow transplant. There he worked with the leading names in the field of pediatric hematooncology, immunology & bone marrow transplant. After working there for a year, he moved to St Mary’s hospital, Imperial College NHS trust, London, United Kingdom to work more in the field of pediatric hematology and BMT. He moved back to India in March 2014 and joined back BLK super specialty hospital as a consultant pediatric hemato-oncology & BMT. Apart from pediatric acute leukemias, lymphomas, pediatric solid malignancies, he is keenly interested in hematopoietic stem cell transplant especially alternative donor transplants (Voluntary unrelated donor & Haplo-identical donor). Dr Kharya has a vast experience in transplanting children with various blood disorders benign or malignant, immunological diseases etc nationally and internationally. He has presented many papers in national and international conferences and has published many papers in national and international journals. Dr Kharya is credited for doing the largest number of BMT’s for SCD. He has developed various innovative protocols for haploidentical bone marrow transplant for sickle cell disease in India. Till date Dr Kharya has done close to 1000 transplants for various diseases along with his team members. Dr Kharya hold significant experience in bone marrow transplant for Sickle cell disease. He and his team has done >130 BMTs for SCD in past 6-7 years including some of the most challenging transplants. He has special interest and expertise in haploidentical transplant for SCD and other hematological and immunological diseases with very exciting and encouraging outcomes. Apart from his routine clinical work he has keen interest in research in cell and gene therapy to cure various human diseases. His area’s of interest are CAR T cell therapy, gene manipulating strategies to cure hemoglobin disorders (viral vector and non-vector mediated) and virus specific T cells to name a few. Dr Gaurav is of opinion that none of the children who needs treatment for cancer, immunological disease or bone marrow transplant for any indication should be refrained from treatment due to lack of funds. To fulfill this goal, he has tie-ups with NGO’s which provide financial & social support to these kids & their families.

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Author - vijay b