Episode 80 - Living with CSU: The patient’s voice

Professor Marcus Maurer welcomes Dr Carolina Vera Ayala and Associate Professor Jonny Peter to discuss participation in clinical trials for urticaria, including patient concerns around placebo treatment. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Additional resources for this episode: What is clinical research and why is it done?  Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

Professor Marcus Maurer welcomes Professor Philip Li to discuss the management of urticaria in Hong Kong, including access to effective treatments and socioeconomic and cultural factors. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Additional resources for this episode: Hong Kong–Macau severe hives and angioedema referral pathway, Disparities in chronic spontaneous urticaria: Eligibility for drug reimbursement associated with clinical outcomes, Chronic spontaneous urticaria in Hong Kong: Clinical characteristics, real-world practice and implications for COVID-19 vaccination Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

Dr Jason Hawkes joins Professor Marcus Maurer to discuss dermatologists’ lack of urticaria knowledge, including tips on encouraging the US dermatology community to use resources such as the CRUSE app. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Additional resources for this episode: Key messages: Urticaria guidelines; Urticaria: A comprehensive review and Hives: Diagnosis and treatment. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“This is a global problem that requires global solutions, but I think they do come from what we learn in our settings.” Professor Marcus Maurer welcomes Dr Clive Grattan to discuss the differences in the treatment and management of urticaria across the UK and Germany, including guideline recommendations and new treatments on the horizon. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: British Association of Dermatologists guidelines for the management of people with chronic urticaria 2021 and The international EAACI/GA²LEN/EuroGuiDerm/APAAACI guideline for the definition, classification, diagnosis, and management of urticaria. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“I think CARE will grow and grow.” Dr Thomas Buttgereit joins Professor Marcus Maurer to discuss the recently launched Chronic Angioedema Registry (CARE), including benefits for patients, current capabilities and how to get involved. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: Chronic Angioedema Registry. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“There’s still so much we need to learn.” Dr João Marcelino joins Professor Marcus Maurer to discuss autoimmune chronic spontaneous urticaria, including indicative test results and hopes for the future. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: What basophil testing tells us about CSU patients – results of the CORSA study, Autologous serum skin test reactions in chronic spontaneous urticaria differ from heterologous cell reactions and Omalizumab in chronic spontaneous and inducible urticaria: A 9-year retrospective study in Portugal. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“It’s really a catalyst to what the network does.” Professor Marcus Maurer asks Dr Luis Felipe Ensina to reflect on the UCARE Conference 2023, covering personal highlights and expectations for future meetings. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: UCARE Conference 2023. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“It doesn’t just affect one part of your life.” Arzoo Ahmed joins Professor Marcus Maurer to discuss the patient perspective, covering the reality and challenges of living with chronic spontaneous urticaria. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: Our Future Health. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“This is only the beginning of making use of this technology.” Professor Marcus Maurer is joined by asthma and allergic rhinitis expert Professor Jean Bousquet to discuss the collaboration that produced the MASK-Air and CRUSE apps, how they are helping Ukrainian refugees and the possibilities for future development. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: Digitally enabled, patient‐centred care in rhinitis and asthma multimorbidity: The ARIA‐MASK‐air® approach; MASK-Air app and UCRAID (Ukrainian Citizens and Refugees help in respiratory, Allergy, Immunology, and Dermatology). Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.

“Wouldn’t it be nice to find a cure?” Professor Marcus Maurer is joined by Dr Aurélie Du-Thanh to discuss cold urticaria, covering risk factors, diagnosis journey, and the most suitable treatment options. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Utilise the following external links and access additional resources relating to the topics discussed in this episode: Urticaria Group of the French Society of Dermatology, Vibratory urticaria associated with a missense variant in ADGRE2 and Risk factors for systemic reactions in typical cold urticaria: Results from the COLD-CE study. Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria’ podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry.