PD GENEration: Mapping the Future of Parkinson's Disease is a national initiative that offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with Parkinson's disease, in English or Spanish. You can participate from home. https://clinicaltrials.gov/show/NCT04994015
Parkinson’s Outcome Project (POP): This study collects information about the experiences of people with Parkinson’s and care partners over time on topics such as medications, treatment, exercise, and lifestyle measurements. The main goal is to improve health outcomes and quality of life for people with Parkinson’s and care partners. https://www.parkinson.org/research/Parkinsons-Outcomes-Project
TOPAZ – Trial of Parkinson’s and Zoledronic Acid: The TOPAZ study will test if a medicine called zoledronate can prevent fractures in people with PD. A team of doctors who are experts in bone health and PD is leading the study. The use of zoledronate in this study is investigational. You can join if you have PD or Parkinsonism, speak English, and you are 60 years old or older. The study is done from home. https://clinicaltrials.gov/show/NCT03924414
ENLITE PD- Light Therapy for PD (NN110): The goal of this trial is to test the best amount of Light Therapy to improve sleep in Parkinson’s Disease patients. You can participate if you are 45 years old or older, have a diagnosis of PD, and have problems with sleep. https://clinicaltrials.gov/show/NCT04291014
PRISM-PD (NLY01-PD-1): This study is evaluating an investigational drug to determine if it might slow down the progression of PD. By participating in this study, you could help advance the development of treatment options for this disease. You may be eligible if you are between 30 to 80 years of age and have been recently diagnosed with early-stage PD. https://clinicaltrials.gov/show/NCT04154072
SHINE PD (BK-JM-201): The purpose of this study is to test the safety and efficacy (how well it works) of an experimental drug called JM-010 in the treatment of levodopa-induced dyskinesia. You may be eligible to participate if you are between 18-80 years of age, have a PD diagnosis, have experienced dyskinesia (involuntary movements) for at least 3 months. https://clinicaltrials.gov/show/NCT04377945
OPTI-ON: The purpose of this study is to evaluate how treatment with the newly FDA-approved Parkinson’s disease medication opicapone (ONGENTYS®) impacts patients’ symptoms and daily function when added to their existing treatment regimen. You are eligible to participate if you are 18 years of age or older and fluent in English. https://clinicaltrials.gov/show/NCT04787965
LUMA Study (Biogen): The goal of this study is to investigate whether BIIB122 (study drug) may delay progression of PD. You may be eligible to participate if you are between 30 to 80 years of age and have been recently diagnosed with early-stage PD. https://clinicaltrials.gov/show/NCT05348785
Registry of Deep Brain Stimulation with the Boston Scientific VERCISE™ System: Vercise™ DBS Registry: For patients considering Deep Brain Stimulation – Boston Scientific Corporation’s commercially approved Boston Scientific Vercise™ System for DBS. This study will evaluate the economic value and technical performance of the Vercise™ System. https://clinicaltrials.gov/ct2/show/NCT02071134
Deep Brain Stimulation (DBS) Retrospective Outcomes Study: For patients who have had DBS surgery with the Boston Scientific Study. The main goal is to characterize real-world clinical outcomes of DBS using a retrospective review of de-identified patient records. This study is data collection only. https://clinicaltrials.gov/ct2/show/NCT03664609
REGISTRY FOR THE ADVANCEMENT of Deep brain stimulation in Parkinson’s Disease through the Michael J. Foundation: This study collects data on patient outcomes prior to DBS surgery and follows patients’ outcomes up to 5 years. https://rad-pd.org/
Deep Brain Stimulation for Dystonia: This study has been approved by FDA to be used as a Humanitarian Device Exemption for the management of primary dystonia. This protocol will allow us to offer our patients an HDE device that improves the quality of life in patients with dystonia.
Cuneiform Nucleus Stimulation: Atrial of an experimental DBS target for patients with medication-refractory gait freezing who are not otherwise eligible for DBS. https://clinicaltrials.gov/show/NCT04218526
Studies of the Variable Phenotypic Presentations of Rapid-Onset Dystonia Parkinsonism (RDP) and Other Movement Disorders: Natural history study of patients with rapid-onset dystonia Parkinsonism due to ATP1A3 mutation. https://clinicaltrials.gov/ct2/show/NCT00682513
Implementing Team-based Outpatient Palliative Care in Parkinson Foundation Centers of Excellence: This PCORI-funded implementation project is expanding the use of a team-based palliative care program shown to improve quality of life for patients with Parkinson’s disease. This project will establish palliative care as a core service at Parkinson Foundation Centers of Excellence, consistent with the foundation’s goals for patient care.
PD Trials Coming Soon
Dopamine study (Neurochemical and Neurophysiological Assessment during surgery for Parkinson’s disease, dystonia, and essential tremor patients): The purpose of this research study is to examine what dopamine does in the human brain. Dopamine is a chemical found in the brain and, in Parkinson's disease, this dopamine system is damaged and causes problems. This study will help us understand how these behaviors are different in people with Parkinson's disease and other disorders caused by changes in dopamine.You may be eligible to participate if you are scheduled to undergo Deep Brain Stimulator (DBS). https://bit.ly/3y6Nzdp
Abbott DBS Post-Market Study of Outcomes for Indications Over Time (ADROIT): Observational study of Deep Brain Stimulation patients with Abbott DBS system conducted to gather clinical data on how Abbott DBS systems are being used in the routine clinical practice. Randomized DBS study to measure the effectiveness of remote programming versus in-clinic programming. https://clinicaltrials.gov/show/NCT04071847
A Double-Blind, Placebo-Controlled, Randomized, 18-Month Phase 2a Study to Evaluate the Efficacy, Safety, Tolerability, and Pharmacokinetics of Oral UCB0599 in Study Participants with Early Parkinson's Disease.https://clinicaltrials.gov/ct2/show/NCT04658186
HAMLET: A 12-Week Randomized, Double-Blind, Placebo-Controlled Study to Explore the Safety, Tolerability, and Efficacy of Orally Administered ENT-01 for the Treatment of Parkinson’s Disease Psychosis
HD Trials
KINECT-HD2: A Roll-Over Study that evaluates the long-term safety and tolerability of Valbenazine, given once daily.The study lasts for 2 years, and the study drug, Valbenazine, will be provided at no charge.To be eligible for the study, you must have completed treatment in the Kinect-HD Study, or you are 18 to 75 years of age, have been diagnosed with HD, and have chorea (involuntary movements). https://huntingtonstudygroup.org/current-clinical-trials/kinect-hd2/
ENROLL-HD: It is a worldwide research study of Huntington’s disease (HD). This research study will gather clinical information about you and your health and collect biological samples. Researchers will use this information and samples to learn more about HD and to try to find new treatments for the disease. Study participants will be individuals affected by HD or who come from an HD family who are eligible and willing to participate in Enroll-HD. The University of Miami will start recruiting new participants in 2022. https://www.enroll-hd.org/for-hd-families/about-this-study/
TV50717-CNS-40189: The purpose of this study is to provide real-world evidence of the outcomes of treatment of patients with Tardive Dyskinesia and chorea associated with HD, with AUSTEDO®, a drug that is already approved by the FDA for use in clinical practice. This study will investigate the use of a patient titration kit for the first 4 weeks of your AUSTEDO® administration. These kits are designed to help you with the titration (adjustment) of your daily dose of AUSTEDO® so that you may reach the dose that is most effective for you. In this study, your study doctor will observe how well the titration kit works for your titration. This study will also look at how satisfied you and your doctor are with the titration kit.
Dimension study (SAGE-718-CIH-201): The DIMENSION Study is evaluating the safety and efficacy of an investigational oral drug in adults with [early] Huntington’s disease (HD). This drug is being tested to see if it can specifically target cognitive symptoms associated with HD. The study lasts up to 20 weeks and includes 9 visits to the study office. There will be an open-label extension (OLE) study, which is planned to begin later in 2022. Participants who are interested can speak to the study team. https://clinicaltrials.gov/show/NCT05107128
HD Trials Coming Soon
Surveyor study (SAGE-718-CIH-202): A placebo-controlled Phase 2 study in people with HD cognitive impairment and healthy volunteers, with the goal of generating evidence linking efficacy signals on cognitive performance to domains of real-world functioning.
