Patient-Centered Research Archives

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- 7 hours, 38 minutes ago
  
  Cecilia Yamamoto likes your comment at
  At T1D Exchange, we work to improve the lives of people with T1D through research. If you could ask a T1D scientist anything about research, what questions would you want answered? Share in the comments, and your question may be featured in an upcoming article!
  Why aren't there more studies on heart disease risk with only T1Ds? I have read peer reviewed medical articles that confirm that T1Ds were not studied exclusively in statin research. We were advised to be treated with statins even if our cholesterol was excellent and there were no other risk factors. I suffered from elevated A1c, weight gain, insulin resistance, extremely low cholesterol which led to vitamin D deficiency which caused respiratory problems and inability to exercise or enjoy leisure activities due to breathlessness and muscle pain. Doctors believed that any symptoms reported by patients were due to the "Nocebo effect" despite my improvement when I didn't take statins for six months when I forgot to refill my prescription! I suffered these side effects from 2002-2016 when I finally found a doctor who took me seriously. We need to be treated as individuals with T1D, not treated based on studies on the majority of T2 studies.
- 8 hours, 45 minutes ago
  
  Lenora Ventura likes your comment at
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes, my dad had T1. My diagnosi made him and my mom so sad. I tried hard to make it no big deal so they wouldn’t worry.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
- 8 hours, 46 minutes ago
  
  Lenora Ventura has commented in the same post you commented in :
  At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
  Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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T1D Exchange to Present Ten Studies Focused on Quality Improvement, Population Health and Real-World Evidence in Type 1 Diabetes at 80th American Diabetes Association Scientific Sessions

Susana Elman, 3 years ago 0 4 min read

BOSTON–(BUSINESS WIRE)–T1D Exchange today announced that it will share data from ten abstracts, including six late breaking, focused on quality improvement, population health and real-world evidence and outcomes of people living with type 1 diabetes (T1D) at the American Diabetes Association (ADA) 80th Scientific Virtual Sessions. Two posters from the organization’s Quality Improvement Collaborative were recognized by healthcare information firm Close Concerns in its list of Top 50 Most Notable Posters.

Adults & T1D

T1D Exchange Announces Population Health Surveillance Study of COVID-19 in Individuals with Type 1 Diabetes

Susana Elman, 3 years ago 0 2 min read

T1D Exchange today announced the launch of a population health surveillance study of individuals with type 1 diabetes (T1D) who are suspected or confirmed to have contracted Coronavirus Disease 2019 (COVID-19). The results of the study will be used to better understand the etiology and potential outcomes in COVID-19 patients and inform future clinical quality improvement activities to better respond to the global pandemic.

Get Involved

Real World Evidence: What It Means and Why it Matters for Type 1 Diabetes

Susana Elman, 3 years ago 0 3 min read

People living with type 1 diabetes learn, in many ways, to be research scientists and investigators of their own lives. We learn how slices of pizza or a plate of spaghetti affects our blood sugar, and how to mediate those effects with multiple boluses of insulin or a long-lasting dose. We discover precisely how much sugar we need to stay steady during an intense workout session.

In doing so, we begin to learn about the meaning and applications of real-world data and evidence. Modern medical and scientific research takes several different approaches to investigation, from randomized, controlled clinical trials to longitudinal, observational studies that examine how people live with various conditions and therapies in the real world.

Adults & T1D

T1D Exchange Study: Sleep Loss Reported as Most Frequent Daily Hurdle in Life with Type 1 Diabetes

Susana Elman, 3 years ago 0 2 min read

Research on type 1 diabetes often centers on its health impacts, but people with type 1 diabetes have long said that such research only paints half of the picture, and that there are many more hidden costs to life with the condition.

Get Involved

T1D Exchange Registry – Our User-Friendly Way to Participate in Type 1 Diabetes Research

Susana Elman, 3 years ago 0 2 min read

The T1D Exchange Registry is a collection of individuals with type 1 diabetes and their supporters who participate in research. Adults with type 1 diabetes or parents of children with type 1 diabetes can join by registering online, providing consent, and completing a short 28-question survey. Participants will then be asked to complete a similar questionnaire once a year. Once registered, participants will also have the ability to take part in more research opportunities in the future.

11 Avenue de Lafayette
Boston, MA 02111
Phone: 617-892-6100
Email: admin@t1dexchange.org

Trending News

T1D Exchange to Present Ten Studies Focused on Quality Improvement, Population Health and Real-World Evidence in Type 1 Diabetes at 80th American Diabetes Association Scientific Sessions

T1D Exchange Announces Population Health Surveillance Study of COVID-19 in Individuals with Type 1 Diabetes

Real World Evidence: What It Means and Why it Matters for Type 1 Diabetes

T1D Exchange Study: Sleep Loss Reported as Most Frequent Daily Hurdle in Life with Type 1 Diabetes

T1D Exchange Registry – Our User-Friendly Way to Participate in Type 1 Diabetes Research

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Trending News

T1D Exchange to Present Ten Studies Focused on Quality Improvement, Population Health and Real-World Evidence in Type 1 Diabetes at 80th American Diabetes Association Scientific Sessions

T1D Exchange Announces Population Health Surveillance Study of COVID-19 in Individuals with Type 1 Diabetes

Real World Evidence: What It Means and Why it Matters for Type 1 Diabetes

T1D Exchange Study: Sleep Loss Reported as Most Frequent Daily Hurdle in Life with Type 1 Diabetes

T1D Exchange Registry – Our User-Friendly Way to Participate in Type 1 Diabetes Research

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