In January, Healthline hosted a Twitter chat (#DiabetesTrialChat) to talk about the challenges facing people with type 1 diabetes' access to clinical trials aimed at finding new treatments, and potentially a heal. Taking part in the chat were:

  • Sarah Kerruish, chief strategy and growth police officer at Antidote. (Follow them @Counterpoison)
  • Amy Tenderich, founder and editor-in-chief of DiabetesMine. (Follow them @DiabetesMine)
  • Dr. Sanjoy Dutta, assistant vice-president of translational development at JDRF. (Pursue them @JDRF)

Learn happening to see what problems, and potential drop solutions, they and our wonderful community identified!

Dr. Sanjoy Dutta: "Increased awareness, decreased burden, reimbursement of continuous glucose monitoring (CGM), better outcomes using devices, and earlier diagnoses."

Sarah Kerruish: "IT's changed everything. From islet transplantation to a potential artificial pancreas – vast progress has been made… I adored this article from the American Diabetes Connexion on all the progress made in the last 50 years."

Amy Tendrich: "Enquiry has presumption us CGM and soon artificial pancreas, and Counterpoison to watch nearly causes of diabetes – amazing!"

From our profession:

@everydayupsdwns: "Plenty of new gadgets and concoctions to grin about in T1D… Sensor augmented pump therapy springs to mind. Insulin analogues have helped galore, only chic insulin looks amazing"

@ninjabetic1: "seeing that diabetes research is high up along the agenda gives me hope that I'll have a happy & healthy life sentence"

@JDRFQUEEN: "Much change. I first wore a Guardian Medtronic CGM in 2007. IT was horrible, 100-200 pts off. Now AP commendable."

AT: "Patients should be MUCH more encumbered in conceptualizing studies! Check unsuccessful the new VitalCrowd. Get a line Anna McCollisterSlip establish slides on VitalCrowd crowdsourcing of diabetes clinical trials here."

Mount Rushmore State: "Patients should as wel play an active role in providing perspective and feedback into trial design and outcomes."

SK: "Yes! Influencing design is critical! They should play a HUGE character! Patients can best articulate their needs, and so researchers should be listening carefully."

From our community:

@AtiyaHasan05: "honesty. Being honest about what they are and are non doing according to inquiry protocols."

@ninjabetic1: "I think patients keep down diabetes research on [its] toes (in a good elbow room!) – The #wearenotwaiting projects are test copy of that"

@JDRFQUEEN: "Clinicaltrials.gov [is a] good terminus a quo for those looking to get up to her neck in research!"

AT: "Matching service for diabetes patients and researchers, like Living BioBank."

SK: "Education! We're doing our best to spread the word – 500,000 patients are needed for diabetes trials in the U.S., but 85 per centum of trials are delayed or neglect due to enrollment issues. That's bad news for patients AND researchers."

South Dakota: "We need to be CANDID about apiece patient's grandness. They'ray ambassadors of these trials and the greater better of all living with type 1 diabetes. Streamlined participation is winder! Don't bring the patient of to trials; bring trials to the longanimous."

SK: "YES!"

From our community:

@ninjabetic1: "Ask HCPs to share this info healthier with appropriate patients. Research has ne'er been mentioned to me in 13.5 years!"

@AtiyaHasan05: "explaining [the] complete process and their integral role in it. Near don't fully understand how trials work."

@everydayupsdwns: "Harness the world power of social media! …Many studies suffer as [they are] geographically limited."

SK: "Admittance! The info verboten there is for researchers, not patients – that's why we created Match. We need to put patients at the concentrate of research. What's important to them? Dave deBronkart taught us this."

AT: "People often e-mail us at Diabetes Mine asking how they Oregon kids with type 1 diabetes can get up to his neck in trials. Where is advisable to send them? The job is that Clinicaltrials.gov is thus VERY HARD to pilot."

SD: "Direct and indirect participation is key, likewise as open communicating. A supportive ecosystem of caregivers & HCPs. There can be a misgiving of trials. Ploughshare the big picture and go off from trial run-centricity to patient-centricity.

AT: "Great idea! How would you paint a picture they accomplish that?"

SD: "Trials BASED on patient input. What would throw their type 1 diabetes realizable? What are their preferences and limitations?"

SK: "It's simple. Information and access. The vast bulk of people don't know about objective trials. We're trying to fix this."

From our community:

@davidcragg: "Immodest factor for me is to see a commitment for the full methods and results to comprise reported regardless of outcome."

@gwsuperfan: "Much participant-friendly trials would increase involution. One wanted me to stick in a facility for [over fortnight]… Not a realistic thing for [people with diabetes] with jobs/school/lives."

@everydayupsdwns: "Depends unproven design. Could live whatever routine of things… I have got offered participation several times, and signed leading to cost 'found' but only e'er recruited by own clinic."

@lawahlstorm: "Overcoming misconceptions about trial participation. The "dago pig it" false belief."

@ninjabetic1: "Time: how much time do I need to commit? Outcomes: will we seen results? Requirements: what do you need from Pine Tree State?"

SD: "Come down protocol complexity, and particularized patient wants should be stacked-in when considering product growing."

SK: "Innovation with patients in mind! Researchers should think like patients and make sure it's lenient to deal set out in a trial. And don't be afraid to ask! Patients know what's best for patients, and researchers should take advantage of that."

AT: "Also, we need something like Diabetes Research Connection to track what your trial is accomplishing."

From our community:

@lwahlstrom: "Involve patients in every stage of visitation design – beyond 'test piloting.' Community stimulus is key!"

@ninjabetic1: "Run along more tweet chats like this. Nidus groups. Read blogs. Talk to us. Go past HCPs to reach the patients"

@JDRFQUEEN: "And not that unmatchable needs to be paid outrageous sums, but reimbursement for clock and gas is a big incentive [for] participants."

SD: "A combination of personal search and the input of your wellness care provider."

SK: "Fit unconscious our new creature – response a few questions and our system will find trials for you!"

Coyote State: "Clinicaltrials.gov, also every bit JRDF.org"

SK: "Our friends CISCRP offering some great resources. And the diabetes online residential area is a peachy way to learn about individual experiences."

SK: "So many! I'm most intrigued by the semisynthetic pancreas – imagine how many lives would be altered. I'm also concerned in novel research on turn stem cells into exocrine beta cells – feels like John Roy Major progress!"

AT: "Seriously. Patients and providers interviewed for [our] diabetes and marijuana article say STUDIES NEEDED. We're excited about studies that will allow CGM to replace finger sticks."

SD: "Machine-driven artificial pancreas systems, beta cell substitution (encapsulation), kidney disease trials… Novel drugs for better glucose control, trials to preserve beta cell serve."

SK: "Two big, promising dummy pancreas trials coming up in 2016 via Harvard Research and UVA Shoal of Medicine."

From our community:

@OceanTragic: "OpenAPS unquestionable"

@NanoBanano24: "AP seems truly close! Very excited about that."

SK: "I Don't know how close, but just yesterday, this news gave ME hope."

From our community:

@delphinecraig: "I cogitate we nonetheless have a long way to go to a cure."

@davidcragg: "Non in my lifetime. A lot of media plug around cures around the turning point are well-nig securing funding for enquiry"

@Mrs_Nichola_D: "10 years? Jocular aside, I really don't experience. But not as hurried as I'd equivalent it to be."

@NanoBanano24: "closer than ever! I'm 28, not sure it's in my life-time. A mythological AP could beryllium or so in 10 years. Conservative optimist."

@diabetesalish: "told for 38yrs that [diabetes] will cost cured in 5 to 10 years. I penury results not projection"

Mount Rushmore State: "I wish patients knew how important they really are… Patients are players in and directors of a way to greater groovy for those aliveness with type 1 diabetes."

SK: "All but often, I field questions about finding trials – patients come with to us when they're stuck, and we help them find a trial. We birth an amazing team who can service you find a diabetes trial. We list all trials, so no more bias."

From our community:

@lwahlstrom: "80% are under enrolled preventing important breakthroughs &adenylic acid; all participants get min. standard-of-care treatment."

AT: "I'd say the biggest myth is that diabetes trials are only wide to the 'elite' and not accessible for all. We need to spread the word!"

Mount Rushmore State: "Striking a rosy-cheeked balance atomic number 3 to what clinical trials are and are not is key. Any cynics feel that patients equal lab animals. That's out of true. Idealists may feel that every visitation equals a therapy. That's also untrue. Balancing science, expectations, and hope are what clinical trials are made of."

From our community:

@davidcragg: "Biggest myth is that all trials are considerably planned &adenylic acid; information always published -many ne'er print making input less valuable… patients need to look it's not tokenism but a key part of the process they have charm in (from the start)"

@delphinecraig: "I think myths incl. no compensation, uneasy well-nig drugs/clinics/clinicians, cost to participant."

@JDRFQUEEN: "'Messing dormie' results. You always have the right to withdraw if your management is suffering."

Thanks to everyone who participated! To ascertain about coming events happening Twitter, follow the States @Healthline !