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News: FH awareness week

FH awareness week #2 - The EAS-FH Studies Collaboration

Tuesday 22 September 2015  
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September 24 is FH-awareness day. All this week we will focus on the disease Familial Hypercholesterolaemia (FH), aiming to increase the knowledge of this common inherited disease in both Europe and USA, and highlighting the great need for early detection and treatment.

During FH awareness week we will highlight resources and materials available from EAS to tackle FH

The EAS FH Studies Collaboration

The EAS FH Studies Collaboration (EAS FHSC) is major, global initiative to tackle the unmet need of patients with Familial Hypercholesterolaemia (FH). Its aims to empower the medical/global community to seek change in their respective countries or organizations regarding how FH is detected and managed, by promoting early diagnosis and more effective treatment of the condition. The collaboration is led by Prof Kausik Ray (London, UK) and an international steering committee comprising Dr Handrean Soran (UK); Prof John Kastelein, Prof G. Kees Hovingh (Netherlands); Prof Pedro Mata (Spain); Prof Gerald Watts (Australia); Prof Frederick Raal (South Africa); Prof Raul Santos (Brazil); and Prof Alberico L. Catapano (Italy).

EAS FHSC is establishing an international registry of observational studies on FH. The registry will become a global infrastructure through which collaborative research on FH can be conducted. National Lead Investigators are coordinating the collection of data in their region. The data collected will be collated and shared, for use by patients and the medical community to better understanding and quantify the following:

  • What is the contemporary global burden of both homozygous FH (HoFH) and heterozygous FH (HeFH)?
  • How are patients with FH managed?
  • What treatments and advice are FH patients offered and how is their efficacy monitored?
  • What are the impediments to patients attaining their LDL-cholesterol targets (including patient, physician, healthcare, and societal factors)?
  • What is the cross-sectional burden and long-term risk of cardiovascular disease (CVD) in FH? Has survival changed over time as treatments have evolved?
  • What is the impact of on LDL-C goal attainment and/or CVD risk of patient-specific factors (e.g., family history of CVD, diet, lifestyle, ethnicity, comorbid medical conditions like hypertension or diabetes, etc.)? What role do socioeconomic factors play? What are the impact of treatment-related factors (especially awareness of LDL-C targets by treating physicians; knowledge, attitudes and practices with regard to using lifelong medical therapy for an otherwise asymptomatic condition; side-effects to medication and treatment compliance)?
  • What role do societal factors play (including access to healthcare and availability of specialist advice) in enabling patients receiving treatment to target LDL-C goal?
  • What are the influences of gene-drug interactions in attaining LDL-C targets?
  • Are current screening strategies for FH adequate? If not, what can be done differently (especially local solutions to a global problem) to maximise coverage?

Professor Ray states that “through international collaboration of stakeholders we aim to generate large scale robust data on how FH is detected, managed and the clinical consequences of current practice on outcomes. Furthermore, we will work with all stakeholders including patient’s organizations to ensure that these state-of-the-art information are utilized to close gaps in knowledge and/or improve clinical practice for our FH patients.”

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