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Compensation for time

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knowing about clinical trials from my HTC would help me know if I’d be willing for myself or my son to join

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Research in comorbidities and how other disorders impact bleeding and treatment 

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Research in comorbidities and how other disorders impact bleeding and treatment 

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More clinical trials… more known panels and interactive meetings.

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More clinical trials… more known panels and interactive meetings.

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Trials that can be run virtually whenever possible 

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Trials that can be run virtually whenever possible 

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Providing translation services/forms in preferred languages. 

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Providing translation services/forms in preferred languages. 

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Being alerted when these opportunities are available

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Being alerted when these opportunities are available

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and if we qualify

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Have a human and sensitive recognition from medical team

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Have a human and sensitive recognition from medical team

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Confidence that once the trial/research ends, the attention and collaboration with providers continues

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Understanding why/what the study is going to accomplish.

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Understanding why/what the study is going to accomplish.

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Personal ask from a trusted source (HTC or Chapter)

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Personal ask from a trusted source (HTC or Chapter)

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Research older bleeders so we know what’s coming 

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Research older bleeders so we know what’s coming 

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Feeling that the research will be meaningful to other WGPPM members. Ex: seeing results presented in the community for encouragement

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Not categorize everyone into one large group; split based on ethnicities and multiple different bleeding disorders

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Research representative of my diagnosis (not just the severe)

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Research representative of my diagnosis (not just the severe)

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Knowing where my information/ data is being used

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Ensure when the research is explained it is able to be understood by everyone, not just people with science backgrounds. 

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Ensure when the research is explained it is able to be understood by everyone, not just people with science backgrounds. 

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Making sure the goal of the research is clear prior to enrollment

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Research programs that aren’t exclusively clinical trials 

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Research programs that aren’t exclusively clinical trials 

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I think it would be beneficial if HTCs had a link in the patient rooms about ongoing research studies 

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I think it would be beneficial if HTCs had a link in the patient rooms about ongoing research studies 

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Detail and explanation in plain language 

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Detail and explanation in plain language 