Thank you for your interest in LITE. Here we answer some questions about the study.
Study Background
What is the LITE study?
LITE (LRRK2 Investigative Therapeutic Exchange) is a research study looking at the biology of Parkinson’s disease. It includes people with PD or with genetic risk factors and control volunteers. LITE will explore why PD develops in some individuals and not others. This information could help lead to more personalized and effective treatments for PD.
Who is leading this research?
The LITE study is led by researchers at the University of Dundee and is supported by The Michael J. Fox Foundation for Parkinson’s Research. It is part of a global effort to accelerate the development of therapies targeting the LRRK2 pathway.
The LITE study is led by Dr. Esther Sammler, a Parkinson’s disease researcher and clinician at the University of Dundee. LITE also works in collaboration with the Global Parkinson’s Genetics Program (GP2), sharing data and aligning efforts to help researchers better understand the genetics of Parkinson’s disease.
Why is genetic research important?
Genetic research helps us understand why Parkinson’s disease looks different from person to person. Some people may have a genetic change, like one in the LRRK2 gene, that affects how the disease starts, progresses or responds to treatment.
By studying these differences, researchers can:
LITE focuses on learning from individuals with and without LRRK2 changes to help build a future where Parkinson’s care is more personalized.
Why LRRK2?
LRRK2 is one of the most common genes linked to Parkinson’s disease. Some ethnic populations — Ashkenazi (Eastern European) Jewish and North African Berber descent — are more likely to carry changes in the LRRK2 gene. Changes in this gene can increase the risk of PD, but not everyone with a change will develop Parkinson’s disease.
Studying LRRK2 could help researchers:
LITE includes people with and without LRRK2 changes to learn from a wide range of experiences and biology.
What is a biomarker?
A biomarker is a measurable sign of what’s happening in the body. An example of a biomarker is cholesterol level for heart disease.
In Parkinson’s research, biomarkers help:
LITE is searching for biomarkers linked to LRRK2 and Parkinson’s to improve diagnosis and care.
Why is diversity important in research?
Parkinson’s affects people from all backgrounds, but many communities have been left out of research. LITE includes people from different racial, ethnic, and geographic backgrounds to help address that gap.
Their goal is to identify knowledge gaps and explore new opportunities for Parkinson’s care. LITE also considers country-specific differences in genetic variants linked to PD.
This helps researchers:
Who can be part of this study?
LITE is looking for people with and without Parkinson's:
Has PD diagnosis and a known genetic variant (e.g., in LRRK2 gene)
Has PD diagnosis but no known genetic variant
Has a genetic variant but no PD diagnosis
Has a first-degree relative or multi-incident family history of PD
No PD, no known genetic variant, and no family history of PD
What It Means to Take Part
LITE asks you to complete one or more study visits. These visits may be one day or multiple days. The total time is about six hours.
You may be asked to:
This study does not test a treatment. You will not be given a study drug.
You will be compensated for your participation. Compensation depends on the type of visit and local guidelines. You may also be reimbursed for travel for you and a companion.
The study team will walk you through what to expect and share more information on reimbursement.
Genetic testing helps tell us more about causes and contributors to disease.
It allows researchers to:
• Study how genetic risk affects biology and symptoms
• Explore why some people with genetic changes develop PD and others do not
• Search for biomarkers that could predict or track the disease
Yes, if you want. During the consent process, you can choose whether to receive your genetic results.
If a genetic change linked to Parkinson’s is found and confirmed, the study team will share the result with you. You will also be offered genetic counseling to help you understand what the result means for you and your family.
You will not receive personal research findings from tests like MRI, spinal fluid, or blood unless something clinically significant is found.
If a lab test, scan, or assessment reveals a medical concern — such as a structural abnormality on an MRI or an unexpected finding in your bloodwork — the study team will let you know and help you follow up with your healthcare provider. These results are shared only when they are relevant to your health and require medical attention. Most research findings are used to support future discoveries and will not be returned individually.
By joining LITE, you could help researchers better understand how Parkinson’s disease develops and why it affects people differently. Your participation could lead to better tools and treatments for people living with PD — now and in the future.
You may also:
• Contribute to discoveries that improve early detection and care
• Help ensure that research reflects the diversity of real-world experiences
• Receive compensation for your time and support for travel, if needed
Even if you don’t have Parkinson’s, your involvement can provide valuable insights that move the science forward.
Yes. Participants will receive compensation for completed study visits and reimbursement for travel-related costs.
Compensation for visits:
• £25 for screening procedures
• £150 for questionnaires, biological sample collection, and MRI
• £175 for questionnaires, biological sample collection, MRI, and DaT Imaging
Travel and accommodation:
• If you need to travel for a study visit, your travel costs will be reimbursed
• Accommodation costs may also be covered if required
Companion costs:
• If you need someone to travel with you, they will receive reasonable travel and accommodation reimbursement
Safety and Privacy
What are the risks of joining this study?
Taking part in any research study has some risks. It’s important to think about these before deciding to join.
In LITE, you may be asked to give samples like blood or spinal fluid, complete memory and movement tests, or take part in brain scans. These procedures are safe but may cause brief discomfort, like soreness or bruising. The study team is here to support you and answer any questions along the way.
There is also a small potential risk to your privacy. Read more below on our safety and privacy efforts or talk with the study team.
What will happen to my information and the samples I give?
Your samples will be handled with care and stored securely. They will be sent to a laboratory where scientists will study them to learn more about Parkinson’s disease and related biology.
Any leftover samples will be stored at a biorepository — a special facility that keeps samples like blood, spinal fluid, or skin at safe temperatures. These samples may be used in future research to help answer new questions and build on potential discoveries made through LITE.
Before anything is collected, you’ll go through a consent process. This process explains exactly how your samples and information may be used, now and in the future.
How will my privacy be protected?
Your safety and privacy are very important. The LITE study has measures in place to keep your samples and information secure.
Any personal details you share — like your name or contact information — will be removed from your sample and health data. This means your sample and information are labeled with a unique code instead of your name.
That code can only be linked back to you by approved study staff using secure systems. Your identifying information is stored separately and protected at your study site.
While no system can guarantee zero risk, every effort is made to protect your privacy. If you have questions or concerns, the study team can talk through steps taken to keep you safe.
Do I need to pay to join this study?
No. There is no cost to you to join this study. All tests are paid for by the research team.
Can I leave the study?
Yes. You can leave the LITE study at any time, for any reason. Joining a research study is your choice.
If you choose to withdraw, no new samples or data will be collected. However, any samples or information already collected before your withdrawal may still be used in research.
The study team will explain this during the consent process and is available to answer any questions you may have.