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Updates from the EAS FHSC - the global registry.
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Updates from the EAS FHSC - the global registry.

Introduction

The speaker, Nicola Bedlington, welcomes the audience to a webinar highlighting research outcomes from the European Atherosclerosis Congress. She introduces FH Europe's partnership with the EAS FHSC and the experts participating in the webinar.

  • Nicola Bedlington, senior policy advisor at FH Europe, moderates the webinar.
  • The webinar focuses on research outcomes from the EAS FHSC (global FH registry).
  • FH Europe has a long-standing partnership with the EAS FHSC.
  • Four international experts and researchers are present in this session.

About FH Europe

This section provides information about FH Europe and its mission to support people living with inherited lipid conditions.

  • FH Europe is a network of 31 patient organizations across Europe.
  • They advocate for and support individuals with inherited lipid conditions like FH, HoFH, LP(a), and FCS.
  • The webinar aims to raise awareness and enhance knowledge among patients internationally.
  • Participants are encouraged to introduce themselves in the chat.

Housekeeping Rules

Important rules and instructions for participants during the webinar are explained.

  • The webinar will be recorded and available on demand through YouTube.
  • Subtitles in local languages will be provided for wider dissemination.
  • Questions should be posted in the Q&A section, specifying which speaker they are directed towards.
  • Personal health-related questions should be avoided.

Presentation by Kanika

Kanika presents her work on heterozygous familial hypercholesterolemia (FH) in children and adolescents. She discusses differences in screening, diagnosis, treatment, and goal attainment for LDL cholesterol levels.

FH Detection and Diagnosis in Children and Adolescents

  • Physical signs like Colonial arcus and xanthoma are rare in children and adolescents with FH globally.
  • LDL cholesterol levels vary considerably based on clinical criteria used for diagnosis.
  • Clinical criteria may lead to missing individuals who do not meet the cutoffs.
  • Percentile curves show clear differences in LDL cholesterol levels by age and gender.

Treatment of Children and Adolescents with FH

Kanika discusses how children and adolescents with FH in the registry are being treated and whether they reach recommended LDL cholesterol threshold goals.

  • Kanika's previous analysis included over 11,800 children worldwide.
  • The largest analysis showed that physical signs of FH were rare in this population.
  • Variations in LDL cholesterol levels were observed based on clinical criteria used for diagnosis.
  • The presentation will focus on treatment approaches and goal attainment for LDL cholesterol levels.

This summary covers the first part of the transcript.

New Section

This section discusses the objectives of the registry for FH (Familial Hypercholesterolemia) as a global disorder.

Objectives of the Registry

  • The FH registry aims to gather data and information about FH as a global disorder.
  • It seeks to observe the uptake of tests and best-in-class practices in different countries.
  • The FHSC website provides access to previous recordings and resources related to FH.
  • International experts and researchers collaborate in the EAS FH study and registry.
  • Dr. Amani is part of the policy advisory committee for FH Europe.

New Section

In this section, there is a discussion about LP(a) measurement and an invitation to learn more about it through the EES fhsc website.

LP(a) Measurement

  • LP(a) measurement is mentioned as an important aspect of FH research.
  • The speaker invites viewers to visit the EES fhsc website for more information on LP(a) tests.
  • Previous recordings and resources related to LP(a) can be found on the website.

New Section

This section introduces Hanukkah, who will provide a perspective on international experts' collaboration in the EAS FH study and registry.

Introduction of Hanukkah

  • Hanukkah is introduced as someone who sits on the FH Europe policy advisory committee.
  • Unfortunately, there are some caveats regarding data analysis due to ongoing research collaborations.
  • Hanukkah's recent personal analysis was based on available data from a few years ago.

New Section

This section provides an overview of FH Europe, its mission, and its role in supporting people living with inherited lipid conditions.

About FH Europe

  • FH Europe is a network of 31 patient organizations across different countries.
  • The organization aims to raise awareness and enhance knowledge about FH internationally.
  • FH Europe advocates for supporting people living with inherited lipid conditions.
  • There is a focus on strengthening the patient community and measuring outcomes.

New Section

This section encourages participants to introduce themselves and briefly discusses the cutoff level for elevated LP(a) measurement.

Participant Introduction

  • Participants are invited to introduce themselves in the chat by mentioning their location and purpose of attending.
  • The speaker mentions that previous webinars have received fantastic feedback from participants.
  • The cutoff level for elevated LP(a) measurement is not specifically mentioned due to ongoing research.

New Section

This section provides information about recording availability, subtitles, and dissemination of information related to FH.

Recording Availability and Dissemination

  • The webinar will be recorded and made available on the FH Europe YouTube channel.
  • Subtitles in local languages will be provided for better accessibility.
  • Participants are encouraged to disseminate information about FH widely within their communities.

New Section

This section concludes the webinar by thanking participants and inviting them to post any remaining questions in the Q&A section.

Conclusion

  • The speaker thanks participants for their interest in the webinar.
  • Any remaining questions can be posted in the Q&A section.

Closing Remarks

The speaker expresses gratitude to the excellent speakers for sharing their work and thanks the audience for their engagement. They also provide information about upcoming webinars on related topics.

Thanking the Speakers and Audience

  • The speaker thanks all the speakers for sharing their work.
  • Expresses gratitude to the audience for their engagement and bringing personal health-related questions.

Upcoming Webinars

  • Two upcoming webinars are mentioned:
  • One focusing on highlights from FH Europe's work on screening and detection in children and adolescents.
  • Another one discussing the latest science in lipid space.

Presentation Introduction

Kanika introduces herself and mentions that she will be presenting data on Familial Hypercholesterolemia (FH) in children and adolescents.

Introduction by Kanika

  • Kanika introduces herself as a presenter who will share data on FH in children and adolescents.

Setting up Slides

Kanika prepares her slides for the presentation.

Preparing Slides

  • Kanika sets up her slides for the presentation.

Conclusion

Kanika concludes her introduction, thanks FH Europe, and expresses gratitude for the opportunity to present her work.

Conclusion by Kanika

  • Kanika concludes her introduction by thanking FH Europe for inviting her to present her work.
  • Expresses gratitude once again before saying goodbye.

This summary is based solely on the provided transcript content, and some information may be missing or incomplete.

Video description

Do we know if obesity similarly influences the likelihood of stroke in FH? And do we see similar associations in the subgroup with genetically confirmed FH? Do we know the factors in difference in FH treatment between boys and girls? How can the data on children/adolescents from the FHSC be used for policy advocacy? Statin treatment seems to be e associated with higher diabetes prevalence - do we know why? How often is Lp(a) tested for ie measured currently in people with FH? Is high Lp(a) more prevalent in people with FH or it is simply because Lp(a) elevation is so common that we also see it frequently in people with FH. Or is it still hard to say as the data is insufficient. These and many more topics were covered in our post EAS 2023 congress in Mannheim. The latest data and research updates from the EAS FHSC, the global FH registry, initially soared at the EAS 2023 congress in Mannheim. Those included: • FH in children and adolescents -presented by Kanika I. Dharmayat, • Global prevalence of overweight and obesity among children and adults with FH, and their associations with CVD- presented by Dr Amany Elshorbagy, • Association of BMI, lipid-lowering medication, and age with prevalence of diabetes in adults with FH -presented by Dr Alexander RM Lyons, • Lipoprotein(a) and ASCVD in adults with FH persented by Ass. Prof. Fotios Barkas. Among many questions received at the webinar, we replied to the following ones: • Do we know if obesity similarly influences the likelihood of stroke in FH? And do we see similar associations in the subgroup with genetically confirmed FH? • Do we know the factors in difference in FH treatment between boys and girls? • How can the data on children/adolescents from the FHSC be used for policy advocacy? • Statin treatment seems to be e associated with higher diabetes prevalence - do we know why? • How often is Lp(a) tested for ie measured currently in people with FH? • Is high Lp(a) more prevalent in people with FH or it is simply because Lp(a) elevation is so common that we also see it frequently in people with FH. Or is it still hard to say as the data is insufficient. Useful resources shared during the webinar: • EAS FHSC, https://eas-fhsc.org/ • EAS FHSC, the global registry, https://www.eas-society.org/page/fhsc • Previous webinar explinng the EAS FHSC registry: https://www.youtube.com/watch?v=QyFA7QTUvSE • And finally FH Europ, https://fheurope.org/