“To establish and run a registry dedicated to familial hypercholesterolemia patients in Asian population”
Scientific knowledge grows by sharing of information & data. Data bases and registries are examples of platforms on which researchers and likeminded researchers and investigators share such useful information. National Familial Hypercholesterolemia Registry –Asia is going to be one such platform on which researchers in the field of Lipidology will collaborate and work together.
It is expected that research from this database will help researchers to better understand the
nature of Familial Hypercholesterolemia and assist in developing future clinical research.
The National Familial Hypercholesterolemia Registry –Asia is being established and supported financially National Familial Hypercholesterolemia Registry –Asia. The research will be conducted according to the norms of Apollo Ethical Committee in Human Research
Th association of Atherosclerosis, Dyslipidemia & Coronary artery disease (CAD) is well established. The Serum Lipid profile has therefore taken an important place among investigations .The understanding of this association has resulted in the evolution of both preventive as well as therapeutic strategies to combat the menace of Coronary artery disease.
The WHO is concerned that India may become the capital for Diabetes and Coronary artery disease, and has issued a warning for researcher & planners. Attention is being focused towards the preventive and treatment related modalities.
Familial Hypercholesterolemia is one of the major condition connected to premature CAD that has been studied less extensively. CAD attributed to familial Hypercholesterolemia is a severe form of the disease associated with increased mortality.
The earlier FH is detected, the better moreover the reasons for the reduction in the incidence as well as mortality in people suffering from CAD in USA, is early detection of “Dyslipidemia” and its management. Herein lies the importance of this Registry- an attempt to sensitize and educate the medical fraternity for early diagnosis and treatment of FH in Asia
The above facts form the basis for our endeavor in establishing a registry for familial Hypercholesterolemia this will provide an opportunity to understand the disease better, plan research and follow up of these patients and advocate with the national authorities.
We have our individual patients and their data, which when we will share with each other, and this way the numbers will multiply. This registry will be a common platform where this may be done.
- Multiple centers and investigators including but not limited to LAI are involved
- Cardiologists and physicians taking care of patients all over Asia with familial hypercholesterolemia.
- The Registry data will be maintained on the LAI website-under the control of Registrar of LAI.
- Types of data: Either electronic or paper or both.
- Registrar/Coordinator: Dr(Prof.) Raman Puri.
- Entry criteria: Children, adults diagnosed with primary FH, on the basis of biochemical, genetic tests in any of the Asian countries.
- Country specific data- for example for Indian patients, data will be collated by an Indian sub-registrar.
- Electronic data forms/paper based forms will be identical for all Asian countries.
There is no membership fee to join the registry on any charges for interactions. The funding is by Lipid Association of India.
Publishing of Results
Before sharing the results, we will take the necessary permissions from the respective ethical committees. Data of individual patients will be anonymized and the other participants and contributors will also ensure the safety of this data.
Future Benefits and discussion
The data on familial Hypercholesterolemia, the identification of suffering families, the lipid patterns, the associated abnormalities will help us understand the Premature coronary artery disease better, evolve the strategies to prevent them in time and treat them effectively. We will thereby help our population to get their problems identified in time, get effective treatment and escape the sequels of such disorder, which otherwise significantly affect the lifestyle and seriously jeopardize working capabilities.
We will be benefitted by data & experience of each other via this this registry.