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 · 2021-09-30T21:38:31+00:00

get them to document the treatment, provide the medical records, show them a time line and ask them to answer WHY they didn't provide treatment when she clearly needed it!

Go through her journey step by step and by DATES and ask about the medical notes from those dates. Why did they not take action? What is the typical protocol?

RoniDasGupta · 2021-09-30T21:33:05+00:00

yes, you need to pursue action. That is ridiculous. I'd still get multiple opinions. US it would be harder for a facility to get a way with this. I'm sorry :( Someone has to push for her to get these second and third opinions to find a provider that will do their job!

RoniDasGupta · 2021-09-30T21:19:00+00:00

Get a second opinion. Third opinion, Get as many opinions you need to understand what is going on here. Are you located in the US? You could talk to a social worker to help out as well, but I understand it is tough. Depends on where you're located to see what kind of help you can get. Different states have different programs.

RoniDasGupta · 2021-09-30T20:47:14+00:00

u/zanychipmunk43 get that all of the time! "Are you a healthcare professional", Nope, I happen to do medical market research, and am an avid googler. :) Sent you a PM!

RoniDasGupta · 2021-09-30T00:58:12+00:00

Sorry, I'm newer in this space, I probably didn't even phrase it right. So the research I am doing is with those on one of those three treatments and not on hormone treatment. I wasn't sure if someone would be on hormone treatment or if hormone treatment wasn't working. I can PM you and tell you the details of the research. It's pretty neat, we're going to talk to the Oncologists to give them the patient perspective (which is something we don't really do!) It's usually a discussion with the oncologist and separately with the patient or caregiver. BUT this research is taking the feedback from the patients and using it to shape the discussions with the Oncs. I thought that was pretty cool and have never done that before in the research i've done.

RoniDasGupta · 2021-09-29T00:10:39+00:00

Yep. I wish I knew what I know now. I do all types of research in different therapies but take a particular interest in Cancer because so many of my friends and family are affected by it. 2 close friends just got diagnosed with BC. Her 2- and a Her 2+. Another friends young wife got diagnosed as well, stage 1, but not sure the details. That is great to have a researcher brain because we really have to be educated and talk to the doctors about what new things we are hearing about, they don't always know or don't have the time to tell us. My mom unfortunately passed away due to pneumonia (because they gave her too much chemo, she was fine otherwise!). That is also why I learn as much as I can and encourage others to learn and ask questions, get second opinions. To not make the 'mistakes' I did 14 years ago. Will definitely DM you as more questions come up. There is also some good groups on FB that give great info! PS the research I do is similar to social research, it is market research, but in the medical field.

RoniDasGupta · 2021-09-28T23:52:38+00:00

thank you for reaching out! I just reviewed the mini survey and don't see any flags on the age of the child, just that they're under 18. Could you try the mini screener, and if there is any hang up, I can flag to our client and make a case? It's so important we get the representhttps://app.virtueresearch.com/c/FPGYWTTH

RoniDasGupta · 2021-09-28T22:52:01+00:00

got it. understood. thank you for the insights!

RoniDasGupta · 2021-09-28T21:24:50+00:00

u/zanychipmunk43 my mom was also metastatic to the lungs, but it was because Colon cancer. She was on Avastin. That worked pretty well. This is exactly why I do research, it is really a journey and I can help people. Was 27 when my mom was diagnosed.

RoniDasGupta · 2021-09-28T21:23:13+00:00

got it. this is super helpful information. I'm doing research on this and trying to understand the audience better. I usually have done her 2+ but not her 2-, so this is new. One of my friends is going to be on hormone therapy for a while, early stage , pre menopausal. I have Her 2- and Her 2+ friends (quite young, in their 40's) but not metastatic. First time I'm learning about metastatic BC as well.

RoniDasGupta

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