Global Cure SCD 2022: Combined Panel Q & A Session скачать в хорошем качестве

Global Cure SCD 2022: Combined Panel Q & A Session

The presenters and additional experts discuss questions from the audience about curative therapy for sickle cell disease from the Global Cure for Sickle Cell Disease Conference on October 8, 2022. Moderated by Dr. Michael DeBaun. Links Mental Health Resources - https://www.genome.gov/research-at-nh... Clinical Trials Reseource - https://clinicaltrials.gov/ Patient Round Table -    • Patient Roundtable S2EP3 - Part 1 of 3   Wunmi Bakare articles - https://www.essence.com/authors/wunmi... Chapters 00:00 Start 01:10 Why we are here - The COALESCE Study 03:27 Marc-keys Moore - Importance of sharing information about cure 05:32 Wunmi Bakare - Biggest concerns about moving forward with transplant and surprises experienced after 11:18 Shirlanna Station - What were your mental health struggles and readjustment challenges after curative therapy 13:21 Dr. Staci Martin-Peron - Mental health therapy recommendations, how to be more proactive 16:52 Wunmi Bakare - Educational materials for mental health of persons with Sickle Cell Disease 18:20 Arrey-Takor Ayuk-Arrey - Did stress in transitional periods (high school vs college) affect your sickle cell disease and pain experiences? What might help ease these stressors? 21:49 Marc-keys Moore - Education and self-advocacy for life improvement with sickle cell disease 25:07 Dr. Michael DeBaun and panel - The curative therapy marketplace and how to navigate transplant options (gene therapy, stem cell transplant, etc) 29:47 Lydia Pecker - Barriers to getting a transplant and getting ready 31:07 Marc-keys Moore and Wunmi Bakare - Pain management and opioid use 34:15 Shirlanna Station - What are the reasonable expectations and timeline following curative to share with the families? 38:28 Adetola Kassim - Options for children in Africa and dangers of "boutique" clinics for cure 44:50 Wunmi Bakare - Patient Round Table for patient experiences with different curative therapy treatments and experiences 47:15 Dr. Staci Martin-Peron - Support groups pre- and post- curative therapy 48:07 Dr. Michael DeBaun - Need to hear from everyone including people with unsuccessful experiences with curative therapy