Familial and inherited cardiovascular diseases are diverse and affect all irrespective of the geographic and ethnic origin. It is a global phenomenon and requires a worldwide higher strategic healthcare approach. The whole group of conditions comprising many common and rare heart diseases poses a major global health challenge. The proposed Global Familial Heart Challenge (GFHC) is a new international initiative for raising awareness, empowering clinicians, assisting health care providers and public for developing regional and country specific cardiovascular health networks for information, precision diagnosis, targeted multi-specialist health service delivery for patients and families affected with familial and inherited heart disease and data resources.
Aim
To set up and develop the coordinated global network to deal with medical and health challenges of the familial and inherited heart disease.
Objectives and Principles
The Global Familial Heart Challenge (GFHC) is a network of a number of clinical establishments, genetic/genomic laboratories, research centers and patient/ family support groups committed to caring and supporting patients and families affected with a familial/ inherited heart disease organized on the following core principles:
- Each individual center, partner or professional contributes on voluntary basis
- No direct access to any patient clinical or research data or information
- Any information or data shared by the source organization is secured
- Functions through the consortium of several clinicians, health professionals, laboratory scientists, researchers and patient/ family support workers- each group contributing on a participative and consultative basis
- The consortium is arranged on Regional and Country node basis to ensure that national regulatory and legal requirements are adhered to as well as all relevant social, cultural and religious norms are taken into account
- Administered by the appointed executive team selected from the consortium membership
******* UPDATE *******
Since the previous report on the status of the Global Familial Heart Challenge (GFHC), important developments include-
- The project was discussed by the Council of the Association for Inherited Cardiac Conditions (AICC) in the UK. In principle, the project was overwhelmingly supported. Individually several members offered to contribute professional time and expertise in respective areas of clinical practice and also in the chosen geographic area, for example India, East Africa and Asia-Pacific. Details of respective activities will be shared in due course.
- The National Steering Committee for the ICC database is made aware of GFHC. The database is driven by the NHS Cardiology Group led by Prof. Huan Gray (Southampton, UK), the British Heart Foundation (BHF) led by Professor Sir Nilesh Samani and the AICC steered by Professor Hugh Watkins (Oxford, UK) and Professor Elijah Behr (St. George’s, London, UK). It is anticipated that the UK input to GFHC would be, to large extent, dependent up on the UK ICC database.
- The European ICC network led by Professor Arthur Wilde (Amsterdam, The Netherlands) has expressed an interest on GFHC aims and objectives. The European ICC database is now in the final stages and some parts are operational. For the purposes of GFHC, the European ICC database could be acceptable. However, further work needs to be done.
- The cardiovascular group of the ClinVar/ClinGen are aware of the GFHC. Both Professor Ingrid Winship (Melbourne, Australia) and Dr. Heidi Rehm (Boston, USA) have acknowledged the project. Details on actual collaboration are not yet clear.
- A number of cardiology units across India have expressed interest to collaborate and work for GFHC. Series of successful Indo-UK Cardiovascular Genetics conferences have held since 2010 to 2018. So far tertiary cardiovascular medicine and surgery units in India collaborating with GFHC include the Postgraduate Institute for Medical Education and Research (PGIMER), Chandigarh; Dr. KM Cherian Heart Foundation, Chennai and the Christian Medical College, Vellore. Similar meetings are planned in 2020.
Professor Ajay Bahl, Clinical Cardiologist, PGIMER has secured a grant from the Department of Biotechnology, Government of India for developing a dedicated Indian Inherited Heart Diseases Database. The Indian Council of Medical Research (ICMR) is also likely to support further development of the ICC database for other cardiovascular units across India. The GFHC plans to organize educational seminars in different places.
6. Other National/ Regional Cardiology centres in Malaysia, Mexico, Egypt and Ghana are willing to collaborate/work with GFHC. Details would be shared in due course.
Report prepared by Dhavendra Kumar, Cardiff, UK 18th January 2019
For information and collaboration with GFHC-
Contact Prof. Dhavendra Kumar, CEO & Medical Director,
The Genomic Medicine Foundation (UK) www.genomicmedicine.org; kumard1@cf.ac.uk;
dhavendra.kumar@southwales.ac.uk; genomicmedicine@yahoo.co.uk
