Help us improve research into Parkinson's Disease

AccessPD is an international research study involving people diagnosed with Parkinson’s Disease.

We need your help...

  • Nearly one million people in the US are living with Parkinson's Disease [1]
  • This number is expected to rise to 1.2 million by 2030[1]
  • There is still huge opportunity for the development of technologies for improved PD treatment

Join hundreds of participants already taking part in AccessPD

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What's involved for me?

Registry

The AccessPD registry is built from health information provided by Parkinson’s patients which allows researchers to monitor the progression of Parkinson’s Disease over time to better understand the burden/ impact of the disease.

If you consent to take part in the study, you will be sent health and PD related questionnaires, approximately every month, which will ask specific questions regarding your experience of living with PD (for example, how your symptoms may have changed or how PD impacts your daily activities and quality of life). The information you provide will be combined with data from other participants and will be anonymized, meaning you will not be identifiable.

Participation in AccessPD can be done independently via the use of a smartphone, tablet or computer. Alternatively, if you do not have access to the internet or don’t feel confident or able with technology, our study support team is available to help you participate by phone, and a carer or family member can be present if preferred.

Additional research opportunities

Based on your participation in AccessPD and the information you contribute, you may be invited to join selected future studies which may require a healthcare provider or hospital visit. Participation in these additional research opportunities will always be at your discretion and will require your additional consent.

Theses studies may ask you to complete questionnaires or to try out medical devices such as a wearable monitor. In all cases you will be given information to help you decide if this is the right opportunity for you.

Read our latest AccessPD newsletter

Access the Newsletter

Frequently asked questions

  • Who can take part in AccessPD?

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

  • What countries will AccessPD be conducted in and how many patients will be taking part?

    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.

  • What is the goal of 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.

  • Who is uMed?

    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.

  • Who is Cohort Science?

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

  • Will I be informed of any results?

    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.

  • How will my data be used?

    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.

  • Will pharmaceutical companies or other research organizations be involved in AccessPD?

    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.

  • Are there any risks associated with taking part in AccessPD?

    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.

  • Will my healthcare provider be paid for my involvement in AccessPD?

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

  • Will I receive any payment for participation?

    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.

  • What if I no longer want to take part in AccessPD?

    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.

  • Who should I contact if I need more information or wish to make a complaint?

    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 +44 808 304 9869, or email accesspd@cohort.science

Dr. Alistair Noyce

Dr. Alistair Noyce, AccessPD Chief Investigator UK

Dr. Alistair Noyce is Professor in Neurology and Neuroepidemiology in the Centre for Preventive, Detection and Diagnosis (CPDD), in the Wolfson Institute of Population Health, Queen Mary University of London (QMUL).

Find out more about Alistair Noyce