Research Accessibility by https://padlet.com/hbenasutti/2cyllny98069tvlf What would make participating in research feel more accessible to you or someone you know? en-us 2025-08-20 23:37:59 UTC 2025-08-21 22:37:18 UTC hello@padlet.com https://padlet.net/icons/8.0/svg/1f52c.svg https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550835984 Compensation for time

]]> 2025-08-21 22:29:31 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550835984 Have results to share with providers https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836269 2025-08-21 22:30:01 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836269 Make it easier for us to participate https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836479 2025-08-21 22:30:29 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836479 Offers from HTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836521 knowing about clinical trials from my HTC would help me know if I’d be willing for myself or my son to join

]]> 2025-08-21 22:30:33 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836521 Research in comorbidities and how other disorders impact bleeding and treatment https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836603 2025-08-21 22:30:45 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836603 Location close to home. https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836616 2025-08-21 22:30:47 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836616 More clinical trials… more known panels and interactive meetings. https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836723 2025-08-21 22:30:52 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836723 Trials that can be run virtually whenever possible https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836777 2025-08-21 22:31:02 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836777 Providing translation services/forms in preferred languages. https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836845 2025-08-21 22:31:07 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836845 Location close to home or work https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836874 2025-08-21 22:31:10 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836874 Being alerted when these opportunities are available https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836982 and if we qualify

]]> 2025-08-21 22:31:23 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836982 Have a human and sensitive recognition from medical team https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836988 2025-08-21 22:31:24 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550836988 https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837050 Confidence that once the trial/research ends, the attention and collaboration with providers continues

]]> 2025-08-21 22:31:31 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837050 Understanding why/what the study is going to accomplish. https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837083 2025-08-21 22:31:38 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837083 Personal ask from a trusted source (HTC or Chapter) https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837123 2025-08-21 22:31:43 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837123 Research older bleeders so we know what’s coming https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837211 2025-08-21 22:31:59 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837211 https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837219 Feeling that the research will be meaningful to other WGPPM members. Ex: seeing results presented in the community for encouragement

]]> 2025-08-21 22:32:00 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837219 https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837337 Not categorize everyone into one large group; split based on ethnicities and multiple different bleeding disorders

]]> 2025-08-21 22:32:16 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837337 Trust is the investigators https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837434 2025-08-21 22:32:31 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837434 Research representative of my diagnosis (not just the severe) https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837480 2025-08-21 22:32:34 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837480 https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837599 Knowing where my information/ data is being used

]]> 2025-08-21 22:32:48 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837599 Ensure when the research is explained it is able to be understood by everyone, not just people with science backgrounds. https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837603 2025-08-21 22:32:49 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837603 https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837638 Making sure the goal of the research is clear prior to enrollment

]]> 2025-08-21 22:32:56 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837638 Research programs that aren’t exclusively clinical trials https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837900 2025-08-21 22:33:33 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550837900 I think it would be beneficial if HTCs had a link in the patient rooms about ongoing research studies https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550838511 2025-08-21 22:34:55 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550838511 Detail and explanation in plain language https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550838850 2025-08-21 22:35:51 UTC https://padlet.com/hbenasutti/2cyllny98069tvlf/wish/3550838850