On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies, advocates, computer scientists, and health care professionals to discuss the newest innovations in rare neurological diseases.
The goal: Speedier Cures
Conferences like TRNDS are so important because they create spaces for collaboration between brilliant minds in the field. The medical community has one unifying goal- assisting patients like you who are affected daily by their illness. However, members within it have very specialized roles. TRNDS allowed individuals and organizations to share their latest ideas and advancements, stimulating discussion about how to best move forward in the field of clinical patient care through novel approaches – not just in science, but in the logistics, economics, ethics and the technology of patient centered research.
One of the reoccurring themes was the importance of keeping patients informed and involved in the conversation. After all, this is ultimately about you. You are the one who can truly articulate what benefits you and what is a side issue.
The symposium speakers addressed the many burdens patients can experience such as a lack of access to medical records and geographic distance to clinical trial sites. But the medical community knows they aren’t aware of all of the hassles. They want and need you to be a part of this collaboration.
The first step is making sure you’re aware of the discussion. So if you weren’t able to attend TRNDS, here are some of the highlights:
- Innovations in clinical trials
- Michael O’Brien President, Clinical Trials Division, AMC Health: Conducting clinical trials in the patient’s own home to make participation more convenient.
- Sandra Shpilberg Chief Executive Officer & Founder, Seeker Health: Making it easier to find clinical trials. Helping you find them and helping the researcher find you using online mediums.
2. Innovations in data collection
- Arthur Combs Chief Medical Officer, MC10: Wearable monitors to track your symptoms when you’re not in your physician’s office, because that’s not always where they happen.
- Komathi Stem Chief Executive Officer & Founder, monARC Bionetworks, Inc.: Making your medical record digital, easy for you to access and share with researchers.
- Maria Picone Founder, TREND Community: Turning anecdotal patient insights into usable data to guide research direction.
3. Social Media
- Jen Farmer Executive Director, Friedreich’s Ataxia Research Alliance: Using social media to stay informed and connected about the newest trials and developments.
The second step is participating in the discussion yourself. Keep an eye on the University of Rochester, because there’s a great chance TRNDS will become an annual event and we would love to see you at the next one! In the meantime, we encourage you to stay in the conversation by:
- Keeping an open discussion with your primary care physician
- Contributing your thoughts on social media platforms
- Joining or creating an advocacy group for your disease
- Remembering that your input is valued and desired