Join medical experts as they discuss their approaches to identifying, treating, and managing rare diseases, like primary biliary cholangitis, neuroendocrine tum...
Hear from Dr Andrew Dauber and Dr Marta Ramón Krauel in this podcast as they explore short stature conditions, including SPIGFD (severe primary IGF-1 deficiency) / growth hormone resistance, through real patient cases and clinical insights. While growth hormone deficiency is a well-known cause of short stature, this discussion covers patient cases where growth hormone levels are normal or even elevated, yet IGF-1 levels remain low—a hallmark of primary IGF-1 deficiency.
Gain valuable knowledge on identifying and managing this rare condition, with practical takeaways for clinical practice.
Key clinical takeaways:
Growth hormone resistance can range from severe IGF-1 deficiency, like in classic Laron syndrome, to milder mutations in the same receptor. There can also be mutations in other parts of the signalling pathway
Patients with SPIGFD have low IGF-1 levels resulting from growth hormone resistance or insensitivity, rather than deficiency, as they produce sufficient or even high levels of growth hormone without secondary causes of growth failure
Laron syndrome, a classic form of SPIGFD, is characterised by severe short stature and distinct features such as spontaneous hypoglycemia, mid-face hypoplasia, frontal bossing, a high-pitched voice, and underdeveloped genitalia in boys
Early and accurate diagnosis of SPIGFD is crucial for effective management, as growth hormone therapy is ineffective for these patients; recognising the distinction between severe and less severe IGF-1 deficiency, as well as primary versus secondary causes, ensures appropriate treatment to ensure optimal outcomes
Recombinant IGF-1 therapy is indicated for patients with SPIGFD. Healthcare professionals must monitor for adverse events such as hypoglycemia and potential malignancies
Watch the experts in conversation in the full video or get the 5-minute highlights: https://cor2ed.com/pe-connect/programmes/short-stature-spigfd/
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This content is intended for healthcare professionals only.
The medical experts in this podcast are expressing their own views and not those of COR2ED, Supporters or their institution. This podcast is supported by an Independent Education Grant from Ipsen
This podcast is developed by cor2ed.com
Published December 2024
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In this second episode of a two-part podcast series focusing on neuroendocrine tumours (NETs), gastroenterologist Dr Mohid S Khan and NET patient Sally Jenkins explore shared decision-making, between patient and physician.
The speakers discuss different treatment settings, including home vs hospital-based injections, as well as the importance of individualising treatment decisions, as there is often no standard therapy for patients with NETs. Finally, they look at some of the studies reporting patient preferences, and how the data can be used to inform patient decisions.
Prefer to watch and listen? Watch the video and download the full transcript on the COR2ED website https://cor2ed.com/net-connect/programmes/net-shared-decision-making/?media=1
Watch the full video on YouTube https://youtu.be/2JYuPhc2jHg
Watch the highlights video on YouTube – https://www.youtube.com/watch?v=pPMVLjPLv8k
Follow us on social media
LinkedIn: https://www.linkedin.com/company/cor2ed-net-connect
X: https://x.com/net_connectinfo
This content is intended for healthcare professionals only.
The medical experts in this podcast are expressing their own views and not those of COR2ED, Supporters or their institution. This podcast is supported by an Independent Medical Education Grant from Ipsen
This podcast is developed by cor2ed.com
Published July 2024
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22:51
Neuroendocrine tumours (NETs) – Shared decision-making. Part 1: Patient journey
In this first episode of a two-part podcast series focusing on neuroendocrine tumours (NETs), gastroenterologist Dr Mohid S Khan and NET patient Sally Jenkins discuss the importance of communication and collaboration during consultations. This can include how to make a patient feel as comfortable and in control as possible, as well as recognising their goals and concerns.
The speakers share their real-life experiences of what makes a good consultation, from the perspectives of both a patient and a physician. They also explore the importance of support networks, individualising treatment, and the impact of NET and NET treatment options in daily life.
NETs are complex, rare diseases. Optimal management and treatment requires early diagnosis, shared decision-making, and timely referral. Are you aware of how healthcare practitioners and patients can share decision- making? Or the recent data on how patients prefer to receive treatment?
In this first episode of a two-part podcast series, Dr Mohid S Khan and NET patient Sally Jenkins discuss shared decision-making in NET consultations and ways to help the patient in their journey.
Prefer to watch and listen? Watch the video and download the full transcript on the COR2ED website https://cor2ed.com/net-connect/programmes/net-shared-decision-making/
Watch the full video on YouTube https://youtu.be/YgqrEnSePWg
Watch the highlights video on YouTube – https://www.youtube.com/watch?v=pPMVLjPLv8k
Follow us on social media
LinkedIn: https://www.linkedin.com/company/cor2ed-net-connect
X: https://x.com/net_connectinfo
This content is intended for healthcare professionals only.
The medical experts in this podcast are expressing their own views and not those of COR2ED, Supporters or their institution. This podcast is supported by an Independent Medical Education Grant from Ipsen
This podcast is developed by cor2ed.com
Published July 2024
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29:55
Regional differences in NET: Treatment and future developments
In the second episode of a two-part podcast series, Prof. Martyn Caplin and Prof. Rachel Riechelmann discuss how to optimize treatment for people living with NETs and future developments in the field which may help to improve patient outcomes. The episode includes information on different treatment options and modalities, and well as best practice on identifying which patients may benefit most from particular treatments using available biomarkers.
Prof. Martyn Caplin is Professor of Gastroenterology and GI Neuroendocrinology at the Royal Free Hospital and University College London, UK, he also leads The Royal Free London “European Neuroendocrine Tumour Society’s Centre of Excellence” and the UCL Academic Neuroendocrine Tumour Unit, which includes leading scientific and clinical research programmes into NETs. Prof. Rachel Riechelmann is a medical oncologist and clinical scientist focused on colorectal/anal cancers and NETs. Director of the Clinical Oncology Department, AC Camargo Cancer Center, in Sao Paulo, Brazil and is Head of the Neuroendocrine Tumors Reference Center.
Prefer to watch as well as listen?
Watch a video of the experts in conversation and download the full transcript on the COR2ED website: https://cor2ed.com/net-connect/programmes/regional-differences-neuroendocrine-tumours-nets-2/
Or go to the video on YouTube: https://youtu.be/zd_JvUmIhFg
We are pleased to share that this podcast is endorsed by the North American Neuroendocrine Tumor Society (NANETS). You can find out more about NANETS at https://nanets.net/
The medical experts in this podcast are expressing their own views and not those of COR2ED, supporters, or their institution. This podcast is supported by an Independent Medical Education Grant from Ipsen.
This podcast is developed by cor2ed.com
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21:16
Regional differences in NET: Epidemiology, diagnosis, and referral strategies
In this first episode of a two-part podcast series, Prof. Martyn Caplin and Prof. Rachel Riechelmann discuss regional differences in NET epidemiology, and patient pathways, as well as look to future developments.
NETs are complex, rare diseases. Their optimal management and treatment requires early diagnosis, shared decision-making, and timely referral. The best possible patient journey is impacted by regional differences in management strategies, referral pathways, and availability of diagnostic modalities and treatments.. Are you aware of the epidemiology of NETs and current best practices for diagnosis, referral strategies, and treatment for NETs? Or how regional differences can impact these? In this first episode of a two-part podcast series, Prof. Martyn Caplin and Prof. Rachel Riechelmann discuss regional differences in NET epidemiology, patient pathways, as well as look to future developments.
Prof. Martyn Caplin is Professor of Gastroenterology and GI Neuroendocrinology at the Royal Free Hospital and University College London, UK, he also leads The Royal Free London “European Neuroendocrine Tumour Society’s Centre of Excellence” and the UCL Academic Neuroendocrine Tumour Unit, which includes leading scientific and clinical research programmes into NETs. Prof. Rachel Riechelmann is a medical oncologist and clinical scientist focused on colorectal/anal cancers and NETs. Director of the Clinical Oncology Department, AC Camargo Cancer Center, in Sao Paulo, Brazil and is Head of the Neuroendocrine Tumors Reference Center.
Prefer to watch as well as listen?
Watch a video of the experts in conversation and download the full transcript on the COR2ED website: https://cor2ed.com/net-connect/programmes/regional-differences-neuroendocrine-tumours-nets-1/
Or go to the video on YouTube: https://youtu.be/6fKAxS4u-2o
We are pleased to share that this podcast is endorsed by the North American Neuroendocrine Tumor Society (NANETS). You can find out more about NANETS at https://nanets.net/
The medical experts in this podcast are expressing their own views and not those of COR2ED, supporters, or their institution. This podcast is supported by an Independent Medical Education Grant from Ipsen.
This podcast is developed by cor2ed.com
Join medical experts as they discuss their approaches to identifying, treating, and managing rare diseases, like primary biliary cholangitis, neuroendocrine tumours, rare bone diseases, and growth disorders. The conversations also explore the evolving treatment landscape, including exciting innovations in gene therapies and the use of somatostatin analogues.
This independent medical education podcast is for HCPs with the ultimate goal of improving care for their patients. For more information, visit www.cor2ed.com
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