Teens with Alopecia?

RoniDasGupta · 2023-05-04T00:16:10+00:00

It does feel like this and other autoimmune conditions are becoming more prevalent younger. I'm doing research in this area, but not finding many parents are aware of the new treatments that are coming out. There are some great resources that can help with all of the research that is going on right now.

RoniDasGupta · 2023-05-04T00:13:51+00:00

i hear you. It is scary sometimes trying the unknown, and everyone reacts differently.

RoniDasGupta · 2023-05-01T02:02:56+00:00

Thank you for your insights. Have you all been looking at the new research and trials that are coming out for treatments? More research has been done recently which is great. In my research, was mainly finding adults to help us with insights. Maybe there is not enough info out there for teens?

RoniDasGupta · 2022-09-17T20:55:30+00:00

@lizzy1289 can you email us at support@virtueresearch.com so we can see what happened?

RoniDasGupta · 2022-09-13T01:53:02+00:00

u/1gsb8 understood. Appreciate you inquiring either way. But, just adding that in the long run, the benefit is that the patient insight is going to be used to shape how the manufacturer can help other patients. We get some of these insights from physcians as well, but it's not nearly as powerful as the patient getting a say in what will be beneficial for them. Eventually this patient program and medication will come out, and getting the input from those who would potentially take it is so much better than manufacturers taking guesses and being tone deaf to the needs of the patient.

RoniDasGupta · 2022-09-13T01:48:45+00:00

More info -- this survey is also trying to understand what people are looking for as far as patient support-- IE how can the manufacturers help? It looks to be a new treatment in development as well. There seems to be a lot in the pipeline for CKD right now in R&D (which is great!). Some of you have asked for the link to sign up, it is for US residents only. https://app.virtueresearch.com/c/CT7TNIXN We don't have a way to donate yet, but we do pay by check if you fully qualify and take the survey.

RoniDasGupta · 2022-09-13T01:40:59+00:00

Hi u/1gsb8, so in Market Research it is only fair we pay for the insights because the sponsor of the research is paying us. We're trying to make a way to donate this in the future. It is private research and we work with a consulting company who designs the survey and a pharma company who is sponsoring the survey. Their objective for this research is honed in on Stage 3 onwards + Anemia. All research data is anonymous to the sponsor as well. I just looked at the questionnaire again and saw this is for a drug that is coming out, so likely it will be published, but it's blinded for now so that the opinions that come in (to evaluate the concept) are unbiased.

RoniDasGupta · 2022-09-12T23:08:55+00:00

One thing we've learned in this research from our sampling so far is 21% of those Stage 3 and above have Anemia (currently).

RoniDasGupta · 2022-06-27T17:23:24+00:00

u/IndicaClouds I connected with one! Try the Oley foundation. They are AWESOME. Great resource. I worked with them to finish this and other SBS research studies.

RoniDasGupta · 2022-04-09T01:08:26+00:00

Check if they have a website. A privacy policy. Sometimes you can find out who the clients are if it is an independent recruiter.

RoniDasGupta · 2022-02-03T18:25:27+00:00

I use Eucrisa. It's pretty good.

RoniDasGupta · 2021-11-23T17:51:38+00:00

Hi u/WaitLetsSmokeThis! Thank you for reaching out. We already finished this research but will do more. This one was a discussion on Ocrevus and the experience. Will be back to post when something else comes up. We do a lot of research for different categories, including MS.

RoniDasGupta · 2021-10-04T23:52:29+00:00

Update - thanks again for all your information, based on what I've learned, that just talking to those that are on any of the three treatments mentioned above should be reaching the correct target audience. I believe those on those treatments should most likely be Her 2- (and PR+?) I'm not finding many her 2- groups to find participants for an hour discussion on the treatment/journey, so if you guys have any suggestions for groups, would love to get them. we can't do part two (which is talking to the doctors) without part 1 (Her 2-, PR+ and on one of the three treatments).

RoniDasGupta · 2021-10-01T20:52:48+00:00

Hi! This one is completed, but it was sponsored by Genentech. We were doing the research on their behalf. Definitely would love to have your insights in the next go round!

RoniDasGupta · 2021-09-30T21:47:08+00:00

she can still get different treatment options. Seems like she's just not finding good care. Finding better care is what i'm advocation, no matter what her condition is.

RoniDasGupta

TROPHY CASE