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b"ONCE UPON A GENE - EPISODE 145\\nEnsuring that the Patient and Caregiver Voice are Part of Clinical Trial Design and Engagement - Bridging the Gap with Industry with Shazia Ahmad\\n\\nShazia Ahmad is the Senior Director and Head of Patient and Physician Services at UBC. She earned a BS in physiology and neurobiology from the University of Maryland and has over 20 years of experience in the therapeutic development industry.\\xa0\\n\\nEPISODE HIGHLIGHTS\\n\\nCan you talk about your work designing clinical trials?\\nI started my career at the NIH as a Research Coordinator and that's where my work in rare diseases and infectious disease started. I worked closely with patients, parents, caregivers, and care partners. At UBC I've been involved in heading up the patient services division which handles patient advocacy and stakeholder engagement. What invigorates my passion for the rare disease space is my own personal journey. I have a daughter with Kawasaki disease (KD). Because we received a diagnosis in a timely way before going into phase two of KD, we were able to get treatment for her to recover completely. It left a mark on me in my career moving forward to focus on integrating advocacy and understanding the patient journey, and the impact on the families in any program that I would support in healthcare moving forward.\\xa0\\n\\nWhy should families seek out clinical trials?\\nI think it's so important for families to understand the impact that their participation could make in participating in clinical trials because it's hope and a possible treatment. But most importantly, it's helping the overall patient community for that particular diagnosis, which is huge and it's critical.\\xa0\\n\\nWhat transformational changes are you seeing around designing trials and gathering a more diverse population?\\xa0\\nAs I work on clinical trials, I'm seeing more advocacy organizations partnering with the industry and making an impact early on. I'm also seeing a lot of the new technologies coming out for improving diagnosis, creating more communication, education and awareness about rare diseases in general, not just clinical trials. There's a lot of good collaboration going on within patient communities.\\xa0\\n\\nWhat are the gaps with industry right now and how do we bridge that with advocacy?\\xa0\\nIndustry is starting to do a better job in understanding the journey and bringing that into design and implementation. What often happens is they complete the clinical trial and sometimes that awareness and continuous conversation with that patient community is not ongoing. We need more community building within industry to keep those communities engaged and there are gaps there. We also need more sponsors to work together. There's so much that we could do if we really conquer some of these rare diseases together and come together as a community to create a bridge where we can learn from each other.\\xa0\\n\\n\\nLINKS & RESOURCES MENTIONED\\nGlobal Genes Patient Advocacy Summit\\nhttps://globalgenes.org/event/rare-patient-advocacy-summit/\\nUBC\\nhttps://ubc.com/\\nShazia Ahmad - Linkedin\\nhttps://www.linkedin.com/in/shaziakahmad\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\nApple Podcasts\\nhttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\nhttps://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/\\nOnce Upon a Gene TV\\nhttps://www.thedisordercollection.com/"