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Participant Stories
“I participate because it is the right thing to do, for myself, for my children, and for the millions of people who have Parkinson’s disease. Without participation there will be no cure.” –Mike, Diagnosed 7 years
Recently Diagnosed with Parkinson's Disease?
If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.
How Do I Participate?
Finding the right clinical trial Clinical Trial (Clinical Study)A scientific study involving human participants to determine the safety and efficacy of new therapies or new ways of using known treatments. can be challenging and requires research and patience. Before participating in a clinical ClinicalDealing with or based on observation and treatment of people, as opposed to basic science carried out in the laboratory or in animals. trial, talk to your neurologist, NeurologistA physician skilled in the diagnosis and treatment of diseases of the nervous system. family members and people who have participated in clinical trials. Inquire about trials in the area or ask about studies in your Parkinson’s support group. You may also contact research centers in your area. Ask to speak with the neurology NeurologyThe scientific study of the nervous system, especially in respect to its structure, functions, and abnormalities. department, and then ask to speak with someone involved in recruitment for clinical trials in Parkinson’s disease. Clinical research Clinical ResearchPatient-oriented research conducted with human participants (or on material of human origin such as tissues and specimens) for which an investigator directly interacts with human participants. This area of research includes: mechanisms of human disease, therapeutic interventions, clinical trials, or development of new technologies. personnel can be extremely busy, so please be patient and allow time for them to respond.
Use this as a quick step-by-step guide to getting involved in a clinical trial.
- Find a trial by regularly visiting PDtrials.org or other websites, contacting major research centers in your area or talking to your neurologist.
- When looking up trial information, try to determine whether it is a trial you may be able to enroll in, based on where it is taking place and its eligibility criteria. Eligibility CriteriaGuidelines for determining who can qualify to participate in a specific clinical trial. Requiring that all participants share certain characteristics (e.g. age, gender, medical history) ensures that trial results will be due to what is under study and not other factors, helping researchers achieve accurate and meaningful results.
- Write down the official trial number and the study contact details.
- Make a list of any questions or concerns. Find a list of suggested questions that will help you understand more about the trial here.
- Call or email the clinical trial coordinator with these questions and ask for more detailed information on the study.
- Place a follow-up call if your first call did not result in contact from the study staff.
- Talk with your family , friends, neurologist and other clinical trial participants to ensure that all your questions have been answered before you agree to join a trial.
- Arrange an appointment for a screening ScreeningPeriod of selection of clinical trial participants based on ELIGIBILITY CRITERIA. visit with the trial coordinator if you are still interested and eligible.
- Ask the coordinator to keep in touch and inform you about new trials for which you may be more suited if the trial you inquired about is full or if you are not eligible.
- Keep a logbook of your contacts and the trials that interest you as a helpful reminder.
- Don’t be discouraged if you don’t find a suitable trial on the first try. Remember that new trials are starting on a regular basis.
There are a number of other websites that may prove useful to you in your search for information about clinical trials. The federal government sponsors websites that provide information on clinical research and educational resources of all kinds, the most popular being www.clinicaltrials.gov. You may also wish to look into online clinical research resources and listings provided by major Parkinson’s disease research centers based in hospitals, universities and clinical research institutes.
You may also call (800) 801-9484 to receive periodic print updates about new Parkinson’s clinical trials from PDtrials.

















