Dermatology
The HIDRACENSUS 7.3 programme logo

HIDRACENSUS 7.3

HIDRACENSUS 7.3 is an ongoing, expert-led, insight-based programme, sponsored by UCB, that aims to improve the standard of care for patients living with hidradenitis suppurativa (HS) across Europe, through education and best practice sharing.

 

HIDRACENSUS 7.3 engages with all stakeholders involved in HS care, including patients, to gain insights from every perspective of HS management and be a truly holistic and informed programme.

 

The insights will highlight the gaps in HS care and understanding throughout the patient journey. This will inform initiatives to improve disease knowledge of all stakeholders and share best practice HS management to elevate the standard of care for patients with HS.

Why 7.3?

It takes a staggering 7.3 years, on average, for patients to receive a correct diagnosis of HS.1,2

 

HIDRACENSUS 7.3 aims to eliminate diagnostic delays by educating all stakeholders and sharing best practice, to give patients the best chance of positive outcomes.

Our pledge
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Seven-point-three.

The most important number for HS.

 

  • The most important to sufferers. Because it takes on average 7.3 years to correctly diagnose HS
  • Imagine - 7.3 years spent wondering if you are somehow blame
  • That you've not spoken to the right HCP
  • That it'll just keep getting worse
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Seven-point-three is a number.

But to patients, it's a prison sentence.

 

  • So, from here on, we all work together; HCPs, patients, nurses and payors
  • A new initiative ensuring that everyone is heard; everyone brings their own experience. Everyone learns. Everyone benefits
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HIDRACENSUS 7.3

Improved HS care starts here.

Improved HS care starts here

 

Meet our Steering Committee

 

Our Steering Committee of nine leading experts in HS from across Europe drives HIDRACENSUS 7.3.

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Dr Barry McGrath

 

Ireland

 

Co-founder and manager of HS Ireland and HS patient

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Professor Falk G. Bechara

 

Germany

 

Head of the Department of Dermatologic Surgery and Senior Physician, Ruhr-University Bochum

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Professor Farida Benhadou,

 

Belgium

 

Professor of Dermatology, Director of the clinic of Inflammatory Chronic Skin Diseases and Research Unit, Erasmus Hospital, Brussels

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Dr Fiona Collier

 

UK

 

Recently retired General Practitioner, Scotland

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Professor Gregor Jemec

 

Denmark

 

Professor of Dermatology, University of Copenhagen and Head of Dermatology Research, Zealand University Hospital

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Professor Antonio Martorell

 

Spain

 

Associate Professor of Dermatology, Catholic University of Valencia

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Professor Francesca Prignano

 

Italy

 

Associate Professor, University of Florence

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Dr Thrasyvoulos Tzellos

 

Norway

 

Dermatologist, Nordlandssykehuset Bodø and Associate Professor at the Institute of Clinical Medicine, University of Tromsø, Norway

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Professor Christos C. Zouboulis

 

Germany

 

Professor of Dermatology, Venereology and Allergology, Brandenburg Medical School Theodor Fontane and Director of the Departments of Dermatology, Venereology, Allergology and Immunology, Städtisches Klinikum Dessau

Hear what motivates the Steering Committee to be part of the improvement in HS care.
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How will HIDRACENSUS 7.3 elevate the standard of HS care?

 

The ultimate goal of HIDRACENSUS 7.3 is to elevate the standard of HS care to improve outcomes for patients with HS.

 

To achieve this, HIDRACENSUS 7.3 will:

 

 

  • Gather up-to-date, relevant insights from all stakeholders, to gain a holistic understanding of the current standard of HS care and unmet needs
  • Generate disease education initiatives, to increase the knowledge and understanding of HS for all those involved in caring for patients, including patients themselves
  • Compile and expand upon existing best practices for the management of HS, and broaden access and use

 

 

The HIDRACENSUS 7.3 journey

 

Follow the journey of HIDRACENSUS 7.3 to elevate the standard of HS care below:

hidracensus-journey-May-2024.png

As of May 2024:

 

Our Steering Committee has established three key themes for HIDRACENSUS 7.3: 

  1. Understanding and answering patient needs
  2. Structuring a clear road to optimal treatment
  3. Next-generation advocacy

 

The HIDRACENSUS 7.3 programme has recruited over 60 stakeholders, from more than 10 European countries, to provide their insights into the current management of HS by completing a comprehensive questionnaire. The stakeholders represent:

8x Surgeons
7x HS specialists
7x Dermatologists
7x Patient representatives
7x Nurses
5x Payors
5x Pharmacists
4x Psychologists
2x General practitioners
2x Gynecologists
2x Gastroenterologists
2x Emergency doctors
1x Health economist
1x Rheumatologist

The insights-gathering questionnaire covers eight key areas pertinent to the delivery of optimal HS care:

1. Disease knowledge
2. Unmet needs
3. Disease burden
4. The patient’s lived experience
5. Current standard of care
6. Current care pathway
7. The optimal care pathway
8. Multidisciplinary working

The questionnaire responses revealed the current care challenges and educational gaps in HS management from a multistakeholder perspective. The Steering Committee reviewed and grouped the unmet needs into four key care clusters:

Watch this space for more details on how you can be part of the advancement of HS care through HIDRACENSUS 7.3

What is HS?
The burden of HS

Find out more about how we are raising awareness of HS to eliminate diagnostic delays

Read more
UCB’s Under the skin podcast series logo
Under the skin

HS affects all aspects of a patient’s life. Listen to the latest episode of ‘Under the Skin’ here, and find out more about what you can do to alleviate this burden

Listen now
References

 

  1. Barmatz S, et al. Dermatology. 2022;238:772–84.
  2. Nguyen TV, et al. J Eur Acad Dermatol Venereol. 2021;35:50–61.

EU-DA-2300370

 

Date of preparation: January 2024