ROPAD – International Genetics Study

What’s it about?
ROPAD is an observational study focusing on the role of genetics in Parkinson’s. ROPAD stands for Rostock International Parkinson’s Disease Study. It is recruiting 10,000 people from around the world who have Parkinson’s or are at high risk of developing it.

What is the objective?
The principal objective is to characterize the genetics of Parkinson’s, in order to establish a better understanding of disease progression, diagnosis, and treatment. A specific objective is to identify 1,500 people with the Positive LRRK-2 gene defect.

Where is it?
At home, over the phone/by email.

How long does it take?
Not long, maybe an hour.

What does it involve?
You are asked to:-

  • Provide a signed consent form
  • Prick a finger for a small blood sample on the (return) card supplied.
  • Provide a short clinical history
  • Take a neurological exam.

Your blood sample will be tested for the gene mutations that may be relevant to Parkinson’s. If you chose not to be informed of the test results there is no further involvement.

If you  agreed to being informed about the genetic testing results, your doctor will share the medical report with you. After receiving your genetic test results, free genetic counselling can be arranged. This will give you the opportunity to gain a deeper understanding of your medical results and the impact of the findings on your family.

Who is eligible?
Anyone older than 18 who fulfils the following criteria:

  1. You have provided Informed Consent
  2. You have been clinically diagnosed with Parkinson’s, AND/OR
  3. You have a first-degree (e.g. mother, brother) or second-degree (e.g. uncle, grandparent) relative who is a Positive LRRK2 participant already enrolled in the ROPAD Study, AND/OR
  4. You are considered to be at high risk due to your ethnicity/family history.

How do I enrol?

  • Addresses in Cornwall: Christine Schofield, Royal Cornwall Hospitals NHS Trust, Treliske.  email christine.schofield1@nhs.net
  • Addresses in the Plymouth area and North Cornwall:
    Jemma Inches, University Hospitals Plymouth NHS Trust, Derriford. email  jinches@nhs.net
  • Note:- The areas overlap as regards the locations of the Consultants and Parkinson’s care services. PenPRIG is pleased to advertise a choice!

Addresses in Devon:
Contacts tba