Quality of Life & Care

Dr. Anie, Kofi

London North West Healthcare NHS Trust & Imperial College London, London, United Kingdom.
Dr Kofi Anie is a Consultant Psychologist at London North West Healthcare NHS Trust, and responsible for Psychological Services for children and adults with sickle cell disease and thalassaemia. He is also an Honorary Clinical Senior Lecturer at Imperial College London, and has a special interest in Behavioural Medicine and Pain Management. He trained at the University of Surrey and the University of London.
Dr Anie began his professional career at King’s College Hospital, London where he pioneered psychological interventions for children with sickle cell disease. He was later a Research Fellow at St Georges Hospital Medical School in London where most of his work focused on chronic illness and pain, including sickle cell disease. He was appointed to his current position in 1998. He is a Fellow of the Royal Society of Medicine and Associate Fellow of the British Psychological Society. His other professional affiliations include the British Association of Behavioural and Cognitive Psychotherapies, and American Psychological Association.
He has been involved in the development of clinical guidelines and standards of care for sickle cell disease and thalassaemia, including the National Institute for Health and Care Excellence (NICE) Guideline Development Group – “Sickle Cell Acute Pain Episode,” and Expert Working Party for the National Haemoglobinopathies Project. He is currently a Haemoglobinopathies Editor for the Cochrane Library, Scientific Advisor to Sickle Cell Society, and Advisor to Roald Dahl’s Marvellous Children’s Charity.
Dr Anie’s professional aspiration is owed to a personal and family experience of sickle cell disease. His contribution to this area of work is acknowledged internationally. Research interests include Sickle Cell Pain and Quality of Life, Adherence to Treatment and Mobile Technology in Patient Self-Management.

Dr. Brown, Biobele

College of Medicine, University of Ibadan, Nigeria.
Dr. Biobele Brown graduated with the Bachelor of Medicine and Bachelor of Surgery in 1990 from the University of Ibadan, Nigeria. He completed his residency training program in Pediatrics between 1994 and 2000 and qualified as a Fellow of the West African College of Physicians (Pediatrics) in the year 2000. He also has a Master’s Degree in Epidemiology and Medical Statistics. He was appointed a lecturer in Pediatrics at the College of Medicine, University of Ibadan in the year 2000, a Honorary Consultant Pediatrician at the University College Hospital, Ibadan in the year 2002 and a Senior Lecturer in Pediatrics in the year 2004. He is in charge of the Pediatric Hematology and Oncology unit in the Hospital, where children with sickle cell disease and cancer are managed.
Dr. Brown has research and clinical interests in Sickle cell disease and has had observership programs at the Hematology/Oncology division of the Children’s Hospital at Montefiore, New York in 2007 and St. Jude Children’s Research Hospital, Memphis, Tennessee in 2012. He was also beneficiary of the D43 National Institutes of Health Grant, courtesy of the Center for Global Health, University of Chicago. Through the latter, he visited the University of Chicago and studied the newborn screening program for hemoglobinopathies for the State of Illinois, United States, in the year 2013. Through a collaborative effort between Prof. Funmi Olopade and Prof. Paula Jaudes of the Center for Global Health, University of Chicago and Prof. Adeyinka and Dr. Brown of the University of Ibadan, a Parent Handbook for Sickle cell disease in Nigeria was produced in the year 2013. He has also published a number of research articles on Sickle cell disease. Dr. Brown is a member of many professional bodies including the Sickle Cell Support Society of Nigeria, Sickle Cell Hope Alive Foundation, Nigeria Medical Association, the Paediatric Association of Nigeria, the West African College of Physicians, Nigerian Society of Pediatric Oncology, International Society of Pediatric Oncology (SIOP) and the African Organization for Research and Training in Cancer (AORTIC).

Dr. Nembaware, Victoria

H3Africa Coordinating Center, Cape Town, South Africa.
I am the training coordinator for the Human Heredity and Health in Africa Consortium (H3Africa). I am an active member of the Education and Coordinated Training Working Group (ECTWG). I also coordinate a working group developing a Sickle Cell Ontology and the Fellows’ Club. I earned my first degree in Chemistry and Microbiology from the University of Cape Town. I then graduated Cum Laude for my Hons and MSc degrees from the University of Western Cape (South African Bioinformatics Institute). I was awarded a PhD in Bioinformatics in 2008 from the University of Cape Town for a thesis titled “Genome-wide Analyses of Allele-specific Splicing in Human” and an MPhil in Monitoring and Evaluation in 2012. In addition to my didactic training in Bioinformatics and Monitoring and Evaluation, I have research experience in Bioinformatics and in the Public Health field. I have experience in designing, monitoring and evaluation of projects in the Information Communication Technology field (particularly in mHealth). I have conducted numerous mHealth projects which included a public participatory project in the development of the South African National Strategic Plan on AIDS, TB and HIV (2012-2015). To this end, I am developing a mobile phone app in collaboration with members of the H3Africa consortium which is aimed primarily to train H3Africa researchers how to engage and educate the general public on heredity and health in Africa. I am passionate about evidence based training and mentoring of the next generation of African health researchers. My expertise and experience have prepared me for my role as a training coordinator for H3Africa where my mandate is to help the H3Africa consortium build capacity in genomics research and translation through training and retainment of the trainees in Africa.

Dr. Royal, Charmaine DM

Duke University, Durham, North California, United States of America.
Charmaine Royal is Associate Professor of African & African American Studies at Duke University, and affiliate faculty in Duke Global Health Institute and Duke Initiative for Science and Society. Her research and scholarship focus on intersections of genetics and genomics with concepts of “race”, ancestry, and ethnicity. She employs transdisciplinary and global frameworks to explore ethical, social, and scientific issues pertaining to notions of identity and differences that emerge at these intersections. Her primary areas of work include genetic ancestry inference, the interplay of biological and non-biological factors in health and health disparities, and public and professional conceptualizations and uses of race. Sickle cell disease and trait are among her research topics that span these focus areas and her global interests.
Her professional service includes membership on the Bioethics Advisory Committee of the March of Dimes Foundation, Editorial Board for the American Journal of Bioethics, Expert Panel for the World Health Organization’s Grand Challenges in Genomics for Public Health in Developing Countries (Grand Challenges) Project, National Institutes of Health Independent Expert Committee for the Human Heredity and Health in Africa Initiative, and the Data Access Committee of the African Partnership for Chronic Disease Research. She is a past Chair of the Social Issues Committee of the American Society of Human Genetics.
Dr. Royal received a master’s in genetic counseling and a doctorate in human genetics from Howard University. She completed postgraduate training in bioethics and ELSI (ethical, legal, and social implications) research at the National Human Genome Research Institute of the National Institutes of Health, and in epidemiology and behavioral medicine at Howard University Cancer Center.

Dr. Treadwell, Marsha

UCSF Benioff Children’s Hospital Oakland, Oakland, California, United States of America.
Dr. Treadwell is a clinical psychologist and a clinical and health services researcher at the University of California San Francisco (UCSF) Benioff Children’s Hospital Oakland in Oakland, California, United States. Research interests include: cross cultural models of health beliefs and practices; patient reported outcomes (assessment and measurement development); transition from pediatric to adult care; adherence with medical regimens; and factors influencing pain experiences.
Dr. Treadwell is co-principal investigator for the Pacific Sickle Cell Regional Collaborative that aims to improve sickle cell disease clinical services and policy, and enhance workforce development throughout the 8 states in the western United States. Dr. Treadwell is co-investigator on Exploring Perspectives in Genomics and Sickle Cell Public Health Interventions, a Human Heredity and Health in Africa consortium project, funded by the National Human Genome Research Institute, United States. Dr. Treadwell obtained her PhD in clinical psychology from the University of Washington in Seattle, WA USA and her training in clinical research from the Department of Epidemiology and Biostatistics at UCSF.

Prof. Ohene-Frempong, Kwaku

Children’s Hospital of Philadelphia; Sickle Cell Foundation of Ghana, Philadelphia and Pennsylvania, United States of America.
Kwaku Ohene-Frempong, M.D., was born in Ghana and came to the United States in 1966 to attend Yale University. He received his Bachelor of Science degree in Biology in 1970. After graduating from the Yale School of Medicine in 1975, he trained in Pediatrics at the New York Hospital – Cornell Medical Center, and in Pediatric Hematology-Oncology (1977-80) at the Children’s Hospital of Philadelphia (CHOP). Following a 6-year service at Tulane University Medical Center to develop a Sickle Cell Disease Program in Louisiana, he returned to CHOP in 1986. Dr. Ohene-Frempong has organized and been involved in several research projects through the Comprehensive Sickle Cell Center at CHOP and is devoting an increasing amount of time to sickle cell disease program development in Africa. In Ghana, he developed the first public health program for screening newborns for sickle cell disease in Africa. With assistance from the government of Brazil, he is working with Ghanaian colleagues to scale up the newborn screening project into a national program. Ghana launched its National Newborn Screening Program for Sickle Cell Disease in November 2010 with Dr. Ohene-Frempong as the Program Coordinator. Dr. Ohene-Frempong is now Professor Emeritus of Pediatrics at the University of Pennsylvania, Senior Scientist and Attending Hematologist, and Director Emeritus of the Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia. He is also President of the Sickle Cell Foundation of Ghana and a founding member of the Global Sickle Cell Disease Network. In 2010, Dr. Ohene-Frempong chaired the Organizing Committee for the 1st Global Congress on Sickle Cell Disease held in Accra, Ghana. In his work in Ghana, he is collaborating with colleagues in the US, UK, Canada, Brazil, and throughout Africa to strengthen both the public health and laboratory aspects of the National Newborn Screening Programme.