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|Home >> Research >> For Researchers |
|Dysautonomia International wants to do everything it can to help support individuals and institutions around the globe who are working on research related to autonomic disorders.
We raise funds to support research on autonomic disorders, including but not limited to Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), Autoimmune Autonomic Ganglionopathy, and Pure Autonomic Failure. Currently, the our research grants are focused on POTS.
Using our website, e-mail lists, Facebook and Twitter accounts, we are able to assist researchers who are looking recruit patients for IRB approved research on autonomic disorders. In addition, we have developed a POTS Registry working with the NIH's disease neutral recruitment program, ResearchMatch. We also encourage patients to sign up for the Autonomic Disorders Consortium Contact Registry.
Patient Perspectives on Study Design
Our Patient Advisory Board (PAB), which includes several medical professionals and scientists, has provided the patient perspective to researchers on their study concepts, study designs, advertising materials, consent forms and more. The PAB has also beta-tested survey instruments and online portals. All PAB members have signed confidentiality agreements and understand the importance of confidentiality when working with researchers.
Annual Conference Research Project
In 2014 we invited Vanderbilt University researchers to collect serum during our annual conference in Washington, DC, which attracts over 400 patients, caregivers, clinicians and researchers. The researchers did standing tests, physical exams, surveys and a serum collection on 180 patients and controls within less than 48 hours. Our conference guests were eager to volunteer. The project was such a success that we invited Mayo Clinic researchers to do a second study during our 2015 conference. We do not have specific research plans for our 2016 conference, we are open to suggestions on future conference research studies.
Lobbying For Additional Government Funding
Dysautonomia International supports an overall increase in funding to National Institutes of Health (NIH). Within NIH, we support an increase in intramural and extramural research funding to study autonomic disorders. We are partnering with dysautonomia advocacy groups in other countries to push for increased funding abroad.
We host a Dysautonomia Lobby Day during our annual conference in Washington, D.C., bringing patients, family members, friends and medical professionals to meet with members of Congress and federal agencies on matters important to the dysautonomia community.
We also joined the Rally for Medical Research, a disease neutral coalition of private, non-profit and educational organizations demanding increased funding for the NIH. Our volunteers have participated in rallies, lobby days, and 'take action from home' days with the Rally for Medical Research.
If you would like to reach us regarding any of the topics on this page, or for other reasons, we can be reached at firstname.lastname@example.org.