Ben’s Friends regularly receives requests to make our members aware of various studies and drug Trials. Most we decline or ignore. We pass these on to you only if they satisfy our stringent vetting process. While some of these studies are legitimate and provide benefit to are disease patients, many are simply attempts to mine our patient communities for contact information in order to develop mailing lists and registries for commercial purposes. We want to assure all of our members that we NEVER supply ANYONE with patient data or patient contact information.
Before we pass on any opportunities to you, they need to meet several requirements WITHOUT exception:
The study must be designed in such a way that it must add to the body of primary research, both commercial and academic and that primary and academic researchers have access to the data to benefit all patients.
Members must always have exclusive control of their personal health data and contact information, and with whom it is shared.
If a patient chooses to participate they MUST be fairly compensated, either monetarily or with something of monetary value.
The study and/or trial must “pass muster” with our science officer and/or our medical advisory board. In the case of a treatment trial, it must be registered with the FDA and be searchable at https://clinicaltrials.gov/.
In the past week, Ben’s Friends members in the states of CA, CT, FL, GA, IL, MI, NC, OH. TX, NY, NJ & PA received an email from our co-executive director TJ about an opportunity to participate in a sleep and activity research study for Sjögren’s patients. We want to assure you this study meets all of the requirements above.
Many of you are wondering why you received the information, as you are not diagnosed with Primary Sjögrens Syndrome. The reason is this: in the review of the study by our science officer and our medical review committee, it became apparent that Sjögren’s is a very common secondary disease for many members with these diseases. When reviewing the requirements for inclusion in this study, we realized that many, if not most, of the members, in the communities we contacted would qualify.
How many of us find sleep problems and chronic fatigue a part of our daily existence? How great would it be to possibly get some answers, and, perhaps, eventually treatment? If you gave the sleep study offer a miss, we would encourage you to take another look.
Autoimmune conditions often make it challenging to sleep or to complete daily tasks. In a 7-month observational study, learn more about your sleep and activity patterns as someone living with Sjögren’s syndrome — or as a healthy volunteer. The study is open to those living in CA, CT, FL, GA, IL, MI, NC, OH. TX, NY, NJ & PA. There is no medication involved in this study. It’s all about data. You can participate (including having the blood sample taken) from home, and the awesome Science37 study team will be with you every step of the way.