Help us improve research into Parkinson's Disease

Anyone who has been diagnosed with Parkinson’s Disease can join AccessPD.

AccessPD is being conducted in the United Kingdom, the United States and Canada. There is no upper limit set for the number of patients who are able to sign up to AccessPD.

AccessPD aims to improve research into Parkinson’s Disease. Information collected from AccessPD participants can be used to help researchers improve their understanding of the disease, and support the development of new treatments that have the potential to slow down or even reverse the disease in the future.

uMed is a clinical study support company who works on behalf of healthcare providers and study sponsors, including Cohort Science. They will be providing the patient contact and engagement services for this study.

Cohort Science develops and manages studies and registries and they are the study sponsor for AccessPD.

Each patient enrolled in the study will receive quarterly newsletters updating them on the progress of AccessPD, including general updates on PD. We always welcome feedback from our patients taking part in AccessPD and will give opportunities for this regularly.

In AccessPD, we will use information from you and your medical records that is relevant to the study. We will only use information that we need for the study. This information will be available to researchers in a de-identified form, meaning patients will not be identifiable from this information. You will not have any rights to the data or any research developed from the data, including copyright. You will not benefit financially from any commercial uses of the data you share as part of AccessPD. All rights are owned by Cohort Science.

Pharmaceutical and Medical Device companies play a key role in the development of new therapies for PD and will be invited to collaborate with Cohort Science alongside academic and university based researchers.

Whilst every effort will be made to protect your well being and dignity, there can still be risks associated with participating in any medical research. Examples of risks with AccessPD include a data breach of information relating to your health information. Participation in additional research opportunities will always be at your discretion and will require your additional consent. It is important to note that the risks will depend entirely on the specific additional research projects that you participate in, so participation should be carefully considered using all information provided during the invitation.

Participating healthcare institutions and their service providers will be paid administrative costs associated with their involvement in the study.

No, you will not receive any payment. If Cohort Science or its affiliates, research partners or collaborators develop any new product, idea, or service using the data in AccessPD, including those that may have commercial value, you will have no rights in any such product, idea, or service, and you will not benefit financially from any of those efforts or product, idea or service.

You can leave AccessPD at any time without giving a reason by contacting the study support team using the contact details below. Any data that has already been contributed to AccessPD prior to your discontinuation will remain in the study database.

If you are based in the US: Contact our study support team at +1 888 454 5580 or you can email patientservices@accesspd.org.

If you are based in the UK: Contact our study support team at +44 (0) 808 304 9869, or email patientservices@accesspd.org.