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Scleroderma & Raynaud's UK (SRUK)

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Research Study Help

dxxdeejc profile image
8 Replies

Hello forum,

My name is Destiny. I am a third year ungraduate molecular biology, biochemistry, and bioinformatics major at Towson University and in 2001 my mother was diagnosed with Schleroderma.

Of course, at the time I didn’t realize the extent in which that diagnosis would change our family’s life forever, but now I am more curious about the disease more than ever. I am especially interested about the medications patients diagnosed with this disease take and their mental state.

This summer, I was accepted into the LSMAP Research Study program and I need participants to participate in a survey. Currently, I am researching active ingredients in common medication prescribed to patients with the disease and any adverse psychological effects. This is particularly important to me because I feel as though because of the cocktail of drugs my mom takes, it’s taking a toll on her mental health and making her more irritable. If there is a correlation between the drugs and psychological changes, there could be advancements in Schleroderma treatment that would be more patient-friendly.

As a participant, you will be emailed a quick questionarre which will include a series of questions about the medications you are prescribed and actually take, the dosage of your medications and how frequent you take them (daily, by the hour, etc.), as well as agree/disagree and true/false statements regarding the status of your mental health.

Please, if I can have everyone’s participation by July 13th, 2018 I could have a larger sample size and more reliable data. All of your personal information will be completely confidential.

If you have any questions and/or want to participate in my study, please email me at dcarpe9@students.towson.edu and I will send you the questionarre.

Thank you for your cooperation in advance.

Destiny

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dxxdeejc
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8 Replies
zenabb profile image
zenabb

Your question is not answerable. We each have different medication and followed by our rheumatologist. If your mother is unhappy with her treatment she should be seen by her rheumatologist and discuss symptoms physical and psychological.

dxxdeejc profile image
dxxdeejc in reply to zenabb

So far, I’ve found that patients are taking similar medications and some of them overlap! And that’s the key I’m looking for. Just one common one. And if there is no active ingredient in that one to cause a psychological change, then I guess I answered my own question, ha! I’m doing this research as an experience, since this what I hope to be doing when I’m older!

Inamoment profile image
Inamoment

There is no chance of me telling someone who doesn't even have a real name and goes to a university in the usa, or says they do, what medication i take and how i feel about it. I understand the usa doesn't reall do data protection but the eu certainly do

dxxdeejc profile image
dxxdeejc in reply to Inamoment

Hello, I am sure there is some confusion and a little uncertainty, but I can assure you that’s Destiny is my real name: I wouldn’t lie about that, not sure why that would benefit me. I also do go to Towson University, it’s in Baltimore, MD. And this is my first over the summer research internship, so it’s not for a grade and something I’m genuinely curious about. So, please, try not to be rude or accusatory. Just simply choose not to participate. I’m not forcing anyone to give me anything. It’s just hard for me to get a considerable sample size for my data, so I tried to reach out to people (and I only know one person with Schleroderma). And We do have HIPAA laws in the US that does protect patient confidentiality.

Inamoment profile image
Inamoment

Really, the majority of people have more than a single word name. I sincerely hope nobody sends you their email address plus a list of medications. That would be crazy. I am not being rude

dxxdeejc profile image
dxxdeejc in reply to Inamoment

I already had people participate and help me out. I appreciate their help with that. Also, I am not obligated to give out my full name. What would be the purpose in that? Is anyone on here giving there full name on this forum? Should I just assume your name is “Inamoment”? Please, if you don’t wish to participate just move on. But picking on a 19 college student just trying to complete a task is not going to lift you up in any way. I will get the data I need. Thank you though.

Inamoment profile image
Inamoment

Use surveymonkey. Then it is anonymous and easier for you

Inamoment profile image
Inamoment

I'm not picking on you. Do you not understand that trying to collect personal and medical data might not cause a few issues

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