Help us improve research into Interstitial Lung Disease

AccessILD is an international research study involving people diagnosed with Interstitial Lung Disease.

Study details

Join hundreds of participants already taking part in AccessILD

Cohort most prevalent disease diagnoses

IPF & systemic disease with lung involvement

0

average at enrollment

0%

have a carer

0%

current or ex-smoker

0%

report a family history of ILD

Updated monthly

What's involved for me?

Registry

The AccessILD registry is built from health information provided by patients with a diagnosis of ILD which allows researchers to monitor the progression of the disease over time to better understand the burden and impact.

If you consent to take part in the study, you will be sent questionnaires, approximately every month, which will ask specific questions regarding your experience of living with ILD (for example, how your symptoms may have changed or how the disease 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 AccessILD 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 AccessILD 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 AccessILD newsletter

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Frequently asked questions

  • Who can take part in AccessILD?

    Anyone who has been diagnosed with Interstitial Lung Disease can join AccessILD.

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

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

  • What is the goal of AccessILD?

    AccessILD aims to improve research into Interstitial Lung Disease. Information collected from AccessILD participants can be used to help researchers improve their understanding of this group of diseases, to better understand its burden and impact, and support the development of new treatments for ILD.

  • 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 AccessILD.

  • Will I be informed of any results?

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

  • How will my data be used?

    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. All rights are owned by Cohort Science.

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

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

  • Are there any risks associated with taking part?

    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 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?

    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 AccessILD, 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?

    You can leave AccessILD 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 AccessILD 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@accessild.org

    If you are based in the UK: Contact our study support team at +44 808 304 9869, or email accessild@cohort.science

Timothy Michael Dempsey, MD, AccessILD Chief Investigator (US)

Timothy Michael Dempsey is a health care provider primarily located in Travis AFB, California in the United States. He specialises in Pulmonology, Critical Care Medicine, and Internal Medicine.

Find out more about Timothy Dempsey

Professor Philip Molyneaux, AccessILD Principal Investigator (UK)

Professor Philip Molyneaux is a professor of Interstitial Lung disease at Imperial College London. He is the Asthma and Lung UK Chair of Respiratory Research. He is a consultant in Interstitial lung disease and the director of the NIHR Cardiorespiratory Clinical research facility at the Royal Brompton Hospital.

Find out more about Philip Molyneaux