Lp(a) International Task Force

Intro and context

The current discourse on Lp(a) among many stakeholders across the globe (Medical Societies, Healthcare Professionals, Academics/Researchers, Patient Organisations and Life Sciences Industry) points to the urgent need to encourage a more systematic and structured approach to testing the population, following guidelines, to decrease the overall cardiovascular disease (CVD) risk / prevent CVD from high levels of Lp(a). The EAS Consensus Statement[1] and other guidelines and recommendations[2] underline that everyone should be tested once in a lifetime. An enabling policy environment is crucial for governments to be able to deliver on CVD prevention, health innovation, and to ensure optimal and swift access to preventative therapies for individuals and relatives affected with elevated Lp(a).

Effective identification of Lp(a) levels as an independent and causal risk factor for CVD and management options, including imminent new medicines, will address a clear Unmet Medical Need (UMN), and sustainability of health systems.

To tackle this, FH Europe Foundation embarked on the preparation of an ambitious global strategy and roadmap on Lp(a). In April of 2023, a Core Team was established with the objective of setting up an International Task Force of experts from several different disciplines to contribute to this. This Task Force met for the first time in June and will finalise its work at a face-to-face meeting in the framework of the ESC Congress in Amsterdam at the end of August 2023. The aim is to launch in January 2024 a 5-year project to implement a global strategy and roadmap for Lp(a) testing.

However, a key milestone before that is a Scientific Summit in the framework of the United Nations General Assembly, during which FH Europe Foundation will present the need for much more policy attention to the global burden of Lp(a) and how this can be effectively tackled, to save lives, and also to reduce pressure on overstretched health systems.

To learn more about elevated Lp(a) please visit https://fheurope.org/lp-a/

Long term overarching outcome

Improve Lp(a) testing uptake and the creation of a more enabling policy environment supporting implementation and access.

ITF Members

Prof. Florian Kronenberg, MD, MAE
CORE GROUP
  • Chair of International Task Force
  • Head of the Institute of Genetic Epidemiology at the Medical University of Innsbruck
  • Austria
Florian Kronenberg received his MD from the University of Innsbruck, Austria. After his training in Medical Genetics in Gerd Utermann's lab, he worked with Roger R. Williams and Steve Hunt at the University of Utah, USA. Later, he headed the Research Unit "Genetic Epidemiology" at the Helmholtz-Center Munich. In 2004, he became full professor and head of the Institute of Genetic Epidemiology at the Medical University of Innsbruck. He is a Member of the Academia Europaea.

His main research interests are genetic and clinical epidemiological studies on lipoprotein(a) as one of the most important genetic risk factors for cardiovascular disease. His team has probably the largest collection of samples with more than 40.000 individuals with in depth characterization of the LPA gene including data from Western blot analyses.

He is Co-Editor of "Atherosclerosis" and served as workgroup member on several guideline and consensus initiatives (K/DOQI, KDIGO and EAS). He chaired the most recent EAS Consensus Statement on Lp(a) (together with Samia Mora and Erik Stroes).

Florian Kronenberg has published roughly 500 papers including 400 original papers and about 90 review articles, editorials and book chapters. He has an H-index of 96 (Scopus) and 112 (Google Scholars) with roughly 51,000 citations.
Nicola Bedlington
CORE GROUP
  • Senior Policy Advisor/Project Lead
  • Founding Partner and Director, Millwater Partners GmbH
  • Austria
Nicola Bedlington was the first Executive Director and Secretary General of the European Patients Forum from 2006 to 2019. Nicola was also the founding Director of the European Disability Forum, (1996 to 1999). Prior to this, she headed the NGO unit within HELIOS, a European Commission Action Programme promoting equal opportunities for disabled people (1991-1996). From 2004 to 2006, she led the Environment and Schools Initiatives Secretariat (ENSI), an international government-based network set up by OECD focussing on Education for Sustainable Development.

Nicola is based in Vienna, and has recently set up Millwater Partners, a consultancy company focused on health, engagement and sustainability. In this role, she has undertaken several projects in the field of cardiovascular health, including authoring the European Action Plan on Cardiovascular Health. She is also advising a number of global initiatives focused on meaningful patient engagement (Patient Focused Medicines Development (PFMD), From Testing to Targeted Treatment (FT3) and the Global Centre for Person -Centred Value Based Healthcare.

Nicola is the Senior Policy Advisor to the FH Europe Foundation, and supported the recent Campaign on FH Paediatric Screening, authoring the Prague Declaration on FH Paediatric Screening. She is the project lead for the Lp(a) preparatory phase.
Magdalena Daccord
CORE GROUP
  • Chief Executive, FH Europe Foundation
  • Switzerland
Magdalena Daccord, Chief Executive of FH Europe, joined the organization in November of 2019, one month before the COVID outbreak. Since then, she grew the Network in size from 25 to 32 organizations, expanded its scope from FH to wider inherited lipid conditions with an equal focus on rare and severe hyperlipidaemias like HoFH and FCS, and since 2021 successfully included Lp(a) into the organisation’s scope. She also established international Scientific and Policy Advisory Committees, and Industry Roundtable. In the past 12 months, she set up Stichting FH Europe in the Netherlands, in order to transform and transition the charity into an EU registered non-profit. By Q1 of 2023, FH Europe Foundation applied for 3 EU grants, leading one consortium and being part of 2 other ones as part of EU4Health, Erasmus and Horizon. Since her joining, FH Europe has become a member of the WHF, EPF, EURORDIS and is a partner of the EACH alliance. FH Europe also collaborates closely with EAS, IAS, EAS FHSC as well as EAPC. She has co-authored several publications in the field of inherited lipid conditions.

Prior to joining FH Europe, Magdalena was engaged with DIA (Drug Information Association) as Head of Operations for EMEA, where she led a team of 7 and ran a portfolio of over 70 educational products for Regulatory, PV and Market Access for Pharma and MedTech, incl. the DIA Annual Meeting, with the participation of FDA, EMA, etc. She was also responsible for Patient Engagement incl. collaboration with EUPATI and EURORDIS.

Before joining the non-profit sector, Magdalena was involved in biotech and pharma industry working in various roles in rare diseases and orphan drugs.

Her professional goal is to contribute to health care redesign with a greater focus on personalised prevention, health promotion and precision medicines.
Magdalena is of Polish origin, living in Switzerland. Over the years, she volunteered with organizations furthering women’s professional and personal development, health, gender and sex equality in health (HBA, Women’s Brain Project, Thrive with Mentoring).
Dr. Marius Geantă, MD
CORE GROUP
  • Trustee FH Europe Foundation
  • President and Co-Founder, Centre for Innovation in Medicine
  • Romania
Marius Geantă is President and Co-Founder of the Center for Innovation in Medicine, a research, innovation and health policy oriented civil society organisation.
Dr. Marius Geantӑ act as well as:
• Trustee and Co-Chair of the Scientific and Public Health Advisory Committee, FH Europe
• Chair of Working Group Education and Curricula at International Consortium for Personalised Medicine (ICPerMed)

Marius is a pioneer in the field of personalised medicine in Europe and is involved in some pan-European innovative healthcare projects, such as Information Technology: The Future of Cancer Treatment, DigiTwins Consortium, Public Health Genomics Network, PECAN, Building Blocks for Personalised Medicine, ReThinkHPVaccination, National Cancer Competency Center, Uncan EU initiative and others.

As President of the Centre for Innovation in Medicine, Marius is the coordinator of “State of Innovation in Medicine” Annual Report and the organiser of the high-level events Science meets Politicians (in partnership with Romanian Parliament) and Personalised Medicine Conference (two editions in partnership with Romanian Presidential Administration).

He has more than 15 years of experience and expertize in the field of health and science communication as editor in chief and publisher of many medical journals and health communication platforms. As expert in the field of health innovation, Dr. Marius Geantă is usualy invited by the mainstream media (TV, radio, websites) to discuss topics of interest - he has more than 1.000 interviews in the context of Covid-19 pandemic.
Prof. Zanfina Ademi, MPharm, MPH, PhD
TASK FORCE
  • Professor of Health Economics and Outcomes Research, Centre for Medicine Use and Safety (CMUS), Faculty of Pharmacy and Pharmaceutical Sciences, Monash University
  • Australia
Dr. Ademi is a Professor of Health Economics and leads the Health Economics and Policy Evaluation Research group at the Faculty of Pharmacy and Pharmaceutical Sciences, Monash University. Their research vision is to improve health and welfare and reduce inequities in society by using high-quality health economic evidence for decision-making. Prof Ademi is currently a member of the Economics Sub Committee of the Pharmaceutical Benefits Advisory Committee which assesses clinical and economic evaluations of medicines submitted for listing on the Pharmaceutical Benefits Scheme (PBS). Their research has impacted policy decision-making processes and attracted $44.6M in funding. Prof Ademi has published >170 original publications, including >33,000 citations (FWCI of 26.66); 50% published in the top 1% most viewed worldwide, 1/2 as first, co-first, and senior author. Prof Ademi’s work is published in top-tier journals, BMJ, NEJM, Lancet, JAMA Cardiology, JAMA Paediatrics, European Heart Journal, Neurology, Diabetes Care, PharmacoEconomics and Value in Health. Their research has led to changes in many clinical guidelines and policies: lipid management; listing of services on the Medical Benefits Scheme [MBS]); heart failure therapies (listing by PBS and Federal Office of Public Health [FOPH], Switzerland); cardiovascular disease PBS listing; kidney disease [KDIGO] guidelines; listing of new hyperkalaemia drug to FOPH, Sweden, Switzerland, Scotland and UK; Lifestyle interventions; listing of herpes zoster vaccine [FOPH] and; evidence of low-value care to disinvest combination therapy for Alzheimer’s disease.

Her work in familial hypercholesterolemia provided evidence of the cost-effectiveness of family genetic testing followed by treatment for familial hypercholesterolemia in Australia. This model supported a successful Medical Services Advisory Committee application recommending genetic screening as a reimbursed item. Moreover, their work on genetic testing in children provided evidence for the first time that testing children and treating them early in life was a cost-saving over their lifetime.
Dr Zhenyue Chen, MD., PhD
TASK FORCE
  • Cardiologist and Professor, Department of Cardiovascular Medicine, Ruijin Hospital, Shanghai Jiaotong University School of Medicine, Shanghai
  • China
Zhenyue Chen, MD., PhD is a Cardiologist and Professor of the Department of Cardiovascular Medicine, Ruijin Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China.

Her clinical interests are in coronary heart disease, atherosclerosis, cardiovascular prevention and dyslipidemia. Professor Chen has been engaged in clinical and basic research and has published more than 100 papers, articles and reviews. She is also an editorial board member for multiple magazines such as JACC: Asia.

Professor Chen is one of the main authors of the recent Chinese guidelines for blood lipid management and has also participated in multiple Chinese guidelines, consensus and expert recommendations including the Chinese Lp(a) expert consensus and the Chinese guidelines for primary prevention of cardiovascular disease.

She is also Executive Committee member of Chinese Cardiovascular Metabolic Medicine Professional Committee of the National Cardiovascular Disease Expert Committee; Secretary General of Chinese National Center for Standardized Cardiovascular and Metabolic Diseases; Vice-head of Lipid & Atherosclerosis Group, Cardiovascular Branch of Shanghai Medical Association; Executive Committee Member of Cardiovascular Disease Special Committee of the Chinese Association of Integrated Traditional and Western Medicine; Member of Metabolic Cardiovascular Disease Group, Cardiovascular Branch of Chinese Medical Association; Member of Atherosclerosis group, Cardiovascular Branch of Chinese Medical Doctor Association; Member of Cardiovascular Branch of Chinese Stroke Society; Member of Medication Treatment Specialized Committee of Shanghai Pharmaceutical Association; Member of Geriatric Medication Committee of Shanghai Pharmaceutical Association; Chairman of Lipid & Atherosclerosis Forum, Oriental Congress of Cardiology, China; Chairman of diabetes Forum of Great Wall Cardiology Conference.
Dr. Jean-Luc Eiselé
TASK FORCE
  • Chief Executive Officer, World Heart Federation
  • Switzerland
Jean-Luc Eiselé has worked in the field of medical association management for almost 20 years. He was trained as a biochemist working at the Biozentrum in Basel and the Pasteur Institute in Paris. In 1999, he joined the European Respiratory Society as Scientific Affairs Manager in charge of the Annual Congress and was offered to develop the educational activities, in particular the online portfolio. In 2001 he was nominated Deputy Executive Director and in 2007 ERS Executive Director. In 2011, he was appointed by FDI World Dental Federation as Executive Director, developing in particular its advocacy work and launching successfully the World Oral Health Day.

He is currently the Chief Executive Officer of the global heart health authority – The World Heart Federation (WHF), leading its strategy and operations. Since his appointment, Mr Eiselé strengthened the business model of the Federation and enhanced Membership engagement.

The World Heart Federation (WHF) is an umbrella organisation representing the global cardiovascular community, uniting patient, medical, and scientific groups. WHF influences policies and shares knowledge to promote cardiovascular health for everyone. WHF connects the cardiovascular community, translates science into policy and promotes the exchange of information and knowledge to achieve heart health for everyone.
Bogi Eliasen
TASK FORCE
  • Director of Health, Copenhagen Institute for Futures Studies
  • Denmark
Bogi Eliasen is Director of Health at the Copenhagen Institute for Futures Studies (CIFS). He was born in the Faroe Islands and is educated in Political Science and International Law from the University of Aarhus, Denmark. He was previously employed by the Faroe Business Affairs and Ministry of Foreign Affairs and worked as a consultant over the last 20 years for politicians, the public sector and private companies.

He is is a knowledge broker whose expertise lies in combining various fields of knowledge. He was one of the initiators of the FarGen project of the Faroe Islands in 2009, which aims at whole genome sequencing the entire population of the Faroe Islands in order to research and develop opportunities in genetics. He is also an expert on the Future of Health at Copenhagen Institute for Future Studies where his focus in on healt of the future.

As Director of Health at CIFS, Bogi sets the stage diving into topics such as the future of genomics, data, digital functions, and their integration with health. This is based on a holistic vision of shaping the future personalized health paradigm as a part of ambitious projects and networks around the world. He received the HIMSS Future 50 global award for his work in 2019. He is also the Chair of the Danish UNESCO Bioethical Committee. He initiated the Nordic Health 2030 process and has a key role in both the global Future Proofing Health Index and Movimiento Salud 2030 that aspires to improve Latin American health by applying the new health paradigm.

His next big focus is facilitating a healthcare paradigm shift by building bridges between the fields of personal and public health.

Prior to joining FH Europe, Magdalena was engaged with DIA (Drug Information Association) as Head of Operations for EMEA, where she led a team of 7 and ran a portfolio of over 70 educational products for Regulatory, PV and Market Access for Pharma and MedTech, incl. the DIA Annual Meeting, with the participation of FDA, EMA, etc. She was also responsible for Patient Engagement incl. collaboration with EUPATI and EURORDIS.

Before joining the non-profit sector, Magdalena was involved in biotech and pharma industry working in various roles in rare diseases and orphan drugs.

Her professional goal is to contribute to health care redesign with a greater focus on personalised prevention, health promotion and precision medicines.
Magdalena is of Polish origin, living in Switzerland. Over the years, she volunteered with organizations furthering women’s professional and personal development, health, gender and sex equality in health (HBA, Women’s Brain Project, Thrive with Mentoring).
Prof. Mariko Harada-Shiba
TASK FORCE
  • Professor at the Cardiovascular Center, Osaka Medical and Pharmaceutical University 
  • Japan
Mariko Harada-Shiba, M.D.,Ph.D is a lipidologist and Professor of Cardiovascular Center, Osaka Medical and Pharmaceutical University, Osaka, Japan.

Her clinical interests are in familial hypercholesterolemia, dyslipidemia and coronary risk. She also has been involved in the development of nucleic acid drugs for dyslipidemia.

She is a member of Science Council of Japan, Chairperson of Primary Dyslipidemia Research Group, Intractable Disease Policy Project, the Ministry of Health, Labour and Welfare. She also is Vice-President of Japan Atherosclerosis Society, Vice-President of International Apheresis Society, Chief Executive of Nucleic Acid Therapeutics Society. She has been a National Lead of Japan in FH-SC of EAS.

Mariko Harada-Shiba received her MD from Shiga University of Medical Science in 1984 and PhD in 1988. She then held a Post-Doctoral and Research Associate position in the Department of Etiology and Pathophysiology (Dr. Akira Yamamoto’s lab) in National Cardiovascular Center and studied lipoprotein apheresis therapy in homozygous and heterozygous FH patients. In 1996, she joined the Department of Biochemistry (Dr. Richard Hanson’s lab) in Case Western Reserve University in USA to work for the project of gene therapy. After returned to Japan, she became the Director of the Department of Molecular Innovation in Lipidology in National Cerebral and Cardiovascular Center and devoted in FH studies involving genetic analysis, risk stratification, establishment of Japanese guidelines and development of new therapeutic approach using antisense drugs. Last year, she moved to Osaka Medical and Pharmaceutical University to become Professor. Now, she is a Member of Science Council of Japan, vice-president of the Japan Atherosclerosis Society, vice-president of International Apheresis Society, executive director of Nucleic Acids Therapeutics Society of Japan.
Dr. Andrija Janićijević
TASK FORCE
  • Global Medical Affairs Lead Internal Medicine / Clinical Chemistry
  • Roche Diagnostics International Ltd.
  • Switzerland
Andrija Janicijevic, MD joined Global Medical Affairs at Roche Diagnostics in 2022 as Medical Affairs Lead Internal Medicine/Clinical Chemistry. This role covers the reagent portfolio in Endocrinology & Clinical Chemistry and contributes to the development and implementation of the medical strategy in the respective disease areas. With 15 years of in-vitro diagnostics experience, Andrija brings to Global Medical Affairs his expertise in medical education and evidence generation activities.

Prior to joining Diagnostics, Andrija was most recently with Roche Diabetes Care, where he was head of Cluster South EE&FM. In this role he collaborated with caregivers, healthcare providers and payers across different countries and regions, advocating for integrated personalised diabetes management, access to screening and testing, as well as more sustainable care models.

Andrija received his bachelor’s degree and MD at the University of Belgrade in Serbia.
Dr. Pia R. Kamstrup
TASK FORCE
  • Chief Physician and Head of Department of Clinical Biochemistry, Copenhagen University Hospital
  • Denmark
Pia R. Kamstrup (1974), MD PhD, is Chief Physician and Head of Department of Clinical Biochemistry, Copenhagen University Hospital – Herlev & Gentofte, Denmark. Dr. Kamstrup earned her PhD in the field of genetic epidemiology in 2008 from the University of Copenhagen. She continues to work with large general population studies, including the Copenhagen General Population study and the Copenhagen Baby Heart Study where she is on the steering committees, exploring the genetic background of cardiovascular disease with a strong focus on lipoprotein(a). She has contributed to international research collaborations, consensus and statement papers on lipoprotein(a), and randomized clinical trials of lipoprotein(a) lowering.
Marc Rijken
TASK FORCE
  • Lp(a) Patient Ambassador
  • OC Improvement Lead, KLM
  • The Netherlands
Marc Rijken will be participating in the group as a patient representative. Besides his own experiences he will represent other patient groups which he will involve as closely as possible by providing his feedback and bringing topics from within the patient groups to the taskforce table.

Marc is is a Lp(a) patient and has suffered from several incidents in the past ten years (2 heart attacks, 1 open heart surgery, 7 bypasses, 1 stent). He was diagnosed with Lp(a) at the age of 46, over 4 years after his second heart attack.

He comes from The Netherlands, is 49 years old, happily married to his wife Manon and together they have three daughters (age 20, 18 and 15). Marc works for the Royal Dutch Airline as an improvement lead (focus on process- and team development) in the Operational Control Center.

Marc has only recently (approx 1 year ago) started to actively work in raising awareness about Lp(a) and testing.
Dr. George Thanassoulis
TASK FORCE
  • Director of Preventive and Genomic Cardiology, McGill University Health Centre
  • Canada
Dr. Thanassoulis is Director of Preventive and Genomic Cardiology at the MUHC and Professor of Medicine at McGill University.

His clinical interests are in cardiovascular prevention, dyslipidemia (specifically lipoprotein[a]) and premature coronary artery disease. He currently runs the MUHC Family Heart Clinic for patients with premature CAD and their families with the goal of optimizing their preventive care. His research interests are in the genetics of aortic valve stenosis where he leads an international consortium investigating the role of genomic variation in this disease. This work has culminated in the recently launched CAVS trial that will evaluate the role of targeted Lp(a) lowering in aortic stenosis. He is also working on developing new approaches to optimize cardiovascular prevention in young individuals. He is the co-chair of the 2021 Canadian Cardiovascular Society Dyslipidemia Guideline Committee.
Špela Bovha
SECRETARIAT
  • Project Manager, FH Europe Foundation

Global Trends

Fundamental health inequalities and the social determinants of health continue to dominate health politics across the world.

Health systems’ sustainability and transformation, and public health policy gaps are major topics for all countries, regardless of GDP. The digitalisation of health, combined with the responsible use of health data are critical enablers.

Global progress on CVD is flatlining. Though rates of CVD deaths globally have fallen in the last three decades, this trend has begun to stall and, without concerted efforts, is at risk of reversing[3]. Notwithstanding, the Sustainable Development Goal 3 on health aspires to a reduction by one third of premature mortality from non-communicable diseases by 2030 through prevention and treatment.

There is now a positive political thrust towards Cardiovascular Health rather than cardiovascular disease, and primordial, primary and secondary prevention, at both global and European levels[4], although more efforts are needed to achieve this “switch” in approach.

A new framework for healthcare is emerging in some countries, which is predictive, preventative, personalised, and participatory (also known as the 4 Ps of medicine). The science of genomics is gaining momentum in the field of CVD, supporting the identification of risk factors, diagnosis and personalised treatment.

There is a new recognition of the importance of personalised prevention at every stage and the need to identify new and different approaches, based on trust and confidence, built around people and society’s needs. Strong examples are apparent in the cancer field.

[3]https://world-heart-federation.org/resource/world-heart-report-2023/
[4]https://www.cardiovascular-alliance.eu/wp-content/uploads/2022/05/EACH-Plan-Final_130522.pdf

Core issues to explore in the context of Lp(a)

1. POLICY GAPS AT GLOBAL AND NATIONAL LEVEL
There is limited or no reference to Lp(a) in legal and policy frameworks. Lp(a) is invisible in UN / WHO resolutions and technical documents at global and regional level. Typically, at national level, where national CVH or Non-Communicable Diseases (NCD) plans exist, Lp(a) does not feature at all. There is a need and opportunity to address this in the framework of personalised prevention, person/citizen centric approaches and 4P- medicine, as outlined above.
2. LACK OF AWARENESS AND KNOWLEDGE
There is extremely limited public awareness about Lp(a) in all countries. Some advocates have questioned whether the name itself presents a challenge as it is a complex abbreviation.
There is also limited awareness and knowledge among general practitioners (GPs) and nurse practitioners, pointing to the need to influence core curricula and Continuous Professional Development (CPD). Training materials and resources, where they do vexist, are often only available in English.

There is also the need for awareness raising among the wider HCPs / health management community more generally, as countries move towards Value-Based healthcare, focussing on health outcomes.
3. GLOBAL STANDARDS FOR MEASUREMENT AND A GLOBAL REGISTRY
There is a lack of consensus on measurement units linked to Lp(a) – international comparisons should be undertaken with caution as the standardisation of the various assays requires improvement.

Linked to this, there is the need to develop a global registry dedicated to Lp(a), to support research/shared decision making with people living with elevated Lp(a) but also to collect vital data reflecting individual behavioural trends and societal aspects to build knowledge and enhance personalised targeted prevention strategies.
4. TESTING - WHEN AND HOW
The EAS consensus statement indicates that people should be tested ‘once in a lifetime’. Lp(a) levels stabilise at around the age of five years old. New-born testing is thus premature, and an ideal scenario may be a single integrated paediatric screening in childhood that would cover FH, Lp(a) and other (lipid) conditions. There are opportunities to link Lp(a) testing with general health checks undertaken at around thirty-five years old in some countries. This would, however, be considered too late for the many people unknowingly living with elevated Lp(a), who already have significant ASCVD and/or aortic valve stenosis.
5. ACCESS AND REIMBURSEMENT 
Reimbursement of testing is not the norm in many countries, and this is an inhibiting factor. Even when it is recommended, available and reimbursed, it is not (routinely) prescribed due to a limited awareness of doctors and patients.
6. LIMITED TREATMENT OPTIONS
Currently there are no approved treatment options for people living with elevated Lp(a), which is reported as further discouraging GPs from testing. The most effective clinically, available intervention for lowering Lp(a) is lipoprotein apheresis however access and affordability is challenging in many countries. Even without a specific treatment option, there exists a clear recommendation to treat other known risk factors as effectively as possible to decrease the global risk in a given person. The misconception that nothing can be done should be counteracted.
7. ABSENCE OF COST EFFECTIVENESS ANALYSIS
There are very few studies, to date, that demonstrate unequivocally the significant cost effectiveness of Lp(a) measuring and treatment and the additional human and financial burden if the risk factor is not identified early enough in the life course.
8. MENTAL HEALTH IMPLICATIONS OF LIVING WITH ELEVATED Lp(a) AS A RISK FACTOR
There is generally poor understanding regarding the mental health implications for the individual and their families, of living with elevated Lp(a) as an inherited risk factor, and the support and counselling structures that are needed.
9. ETHICS
Several fundamental ethical questions exist in relation to Lp(a). These include the decision-making processes linked to Lp(a) testing and cascade testing, informed consent, testing on children, discrimination and stigma by employers and insurers etc.
10. OUTSTANDING RESEARCH GAPS
There remains the need to explore further the impact of high levels of Lp(a) on women across the life course (puberty, family planning and pregnancy, menopause) Further study is also needed on the impact of high levels of Lp(a) on people from different ethnic backgrounds.

Funding

The initial 6-month project is funded by Novartis in accordance with FH Europe’s policy on transparency and independence. Work is currently underway to seek funding from other sponsors and organisations for the 5-year project to implement the strategy and roadmap.

Join this a global initiative!

The initiative is supported by funding from Novartis and Amgen in accordance with FH Europe Foundation’s policy on transparency and independence. We continue to seek funding from other organisations, who share our mission and values, to implement the 5-year strategy and roadmap.