Our challenges don’t definite us. Our actions do.Michael J Fox
While perusing today’s emails, I came across an article on Parkinson’s News Today about the clinical trial Finger Tapping on Smartphone May Measure Parkinson’s Severity. This sounded familiar, so I checked it out. The study was originally published in the journal Nature Scientific Reports. Researchers based at the National Science and Technology Development Agency, in Thailand, used mPower data to investigate the relationship between finger-tapping tasks on a smartphone and scores from the MDS-UPDRS I–II — for non-motor and motor experiences of daily living — and PDQ-8, assessing health-related quality of life.
The reason this looked familiar is that I had been part of the original group using mPower several years ago. mPower is a two-year mobile application-based study using a smartphone to monitor key indicators of disease progression, such as walking, voice, and finger tapping. It is one of the largest mobile Parkinson’s studies, involving more than 8,000 participants. Apparently you can still sign up to join mPower if you are interested.
This trial is being run by Dr. Daniel Corcos, a researcher at Northwestern University in Chicago and is currently taking place in 25 sites around the US.
The SPARX3 (NCT04284436) study is the first randomized control trial designed to investigate the effects of moderate- and high-intensity aerobic exercise on disease progression in untreated patients with Parkinson’s.
To participate in SPARX3, you must have been diagnosed less than 3 years ago and not taking dopamine meds. Dr. Corcos spoke to my Sunday Mornings group in January about this trial. To learn more watch the recording of his talk on Youtube and go to the trial site at https://www.sparx3pd.com.
The goal of the TOPAZ study, sponsored by the Parkinson’s Foundation, is to help Parkinson’s patients avoid fractures that can lead to loss of quality of life and physical function. It will test if a medicine called zoledronate, an FDA approved medicine currently used to treat Osteoporosis, can prevent fractures in people with PD. A team of doctors who are experts in bone health and PD are leading the study.
Requirements to be eligible for TOPAZ
- aged 60 and over
- with Parkinson’s Disease or parkinsonism
- who have not had a hip fracture
Visit the website or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).
Many clinical trials are not completed because they cannot get enough people to participate. You can be part of the solution by volunteering for trials that are of interest to you. You can find out about trials that are currently recruiting volunteers at the Fox Foundation or at the NIH website. Many of these trials provide transportation reimbursement and other compensation in exchange for your participation. Warning: Do not sign up for a clinical trial that asks you to pay to participate.
Rare Patient Voice* offers paid interviews, surveys or online communities where you can share your insights to help researchers develop products and services related to Parkinson’s Disease (no drug trials). I have been working with them for several years and have had a number of good experiences with them.
Most importantly, remember that whatever type of Parkinson’s Disease research you choose to participate in will help to make the lives of People with Parkinson’s better in the future. Thank you for helping in whatever what you can.
*Twitchy Woman is a partner with RPV