Toolkit - EPTRI

Toolkit for patients and families

The toolkit is available with subtitles in different languages and you can visualize them by clicking on the CC icon on the video player. You can find a tutorial on this link.

Basic Research

Groups and lines of research

Translational research

Donation of patients’ samples

Animal testing

Patient and Public Involvement (PPI)

Fundraising

Ethics

Basic research

Basic research collects detailed information about how nature works, improving people’s understanding of the universe. Without basic research there cannot be clinical research. For example, a potential treatment for retinoblastoma could not have been developed if scientists had not studied the origin of this pathology, how retinoblastoma cells grow and interact or in which way certain viruses can infect cancer cells.

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Not So Basic Research: the unrecognized importance of fundamental scientific discoveries

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Drug Discovery, Biotech, and AI with Alex Zhavoronkov, CEO, Insilico Medicine (CXOTalk #327)

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Aspirin Journey through the body - 3D Animation

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Stem Cells

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ORGAN ON A CHIP

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Cell Culture

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Developing a complete in silico model of a minimal cell

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What is DNA and how does it work?

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Understanding science

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CRISPR explained

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70 years of genetics and genomics on healthcare

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Disease modelling with cells

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Data Science for the 9 year old

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What's the Difference Between Gene Therapy, Cell Therapy, and Gene Editing?

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Gene and Cell Therapy FAQ's

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What is basic research?

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RARE Webinar: Understanding Gene Therapy

Groups and lines of research

Translational research builds its efforts in basic research to generate meaningful and applicable results that can directly benefit human health. It is also known as “from bench to bedside”, as the process translates the results obtained in the laboratory and enables the development of a suitable therapy for the patient. This type of research promotes multidisciplinary collaboration among basic and clinical researchers and integrates the needs of the patients.

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Biomedical translation

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From bench to bedside: the growing use of translational research in cancer medicine

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What is translational research?

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Characteristics of a translational scientist

Translational research

Translational research builds its efforts in basic research to generate meaningful and applicable results that can directly benefit human health. It is also known as “from bench to bedside”, as the process translates the results obtained in the laboratory and enables the development of a suitable therapy for the patient. This type of research promotes multidisciplinary collaboration among basic and clinical researchers and integrates the needs of the patients.

Donation of patients’ samples

Donation of body fluids, tissues and cells (known as biospecimens) boost biomedical discovery, leading to new diagnostics and treatments that can benefit millions of patients worldwide. Healthy people can donate biospecimens too, as scientists need to compare pathological to healthy samples when conducting experiments. Biospecimens are used to create cell lines or animal models to study the effect of medicines before starting a clinical trial with human patients.

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Donating Biospecimens for Cancer Research: An Expert FAQ

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Biobanking

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Providing your tissue for research: what you need to know

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Cleo: A biobank story

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Medical Innovations: Biobanks

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About Biobanks

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How you can help medical research: donating your blood, tissue and other samples

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Advancing Cancer Research Together

Animal testing

There are some cases in which medicines and medical devices need to be tested in animals to determine their safety and efficacy. Disease animal models are often developed to investigate disease states in ways that are inaccessible in humans. It is key to select the most appropriate animal model for each human disease. All laboratory experiments involving animals are approved by ethical committees and are subject of strict regulations.

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La investigación con modelos animales, vital para las enfermedades raras

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Why are animals used in scientific research?

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Can we do science without animal testing?

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From gene to treatment: supporting rare disease translational research through model systems

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Why animal research?

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Ethical use of animals in medicine testing

Patient and Public Involvement (PPI)

Patient and public involvement (PPI) in research is the way in which patients, families or the general public can help researchers ensure that the design of their research is relevant, friendly and meets the needs of the community. Lay people can work with research funders to prioritise research, offer advice as members of a project steering group, review and develop research materials or undertake interviews with research participants.

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Toolkit for patient advocacy

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The need for basic research

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A spoonful of info helps the medicine go down

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The ABCs of Advocating in the Classroom

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BECOMING AN EMPOWERED PATIENT: A Toolkit for the Undiagnosed

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The Role of a Chief Science Officer: The Secret Sauce for Forward Movement in Research and Scientific Collaborations

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DRUG DEVELOPMENT ROADMAP

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Understanding Drug Development

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Managing a research project

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Building an Engaged Patient Community

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How to get involved in NHS

Fundraising

Patients and organizations play a key role in funding research. There are multiple models of funding they can implement to raise money to develop research studies: crowd-funding campaigns, donors, events, private foundations, government grants, sponsorship, etc. There are numerous resources to help design an effective fundraising strategy.

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Share4Rare Webinar: Fundraising for non-profits

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5 Essential Tips & Tools for Effective Fundraising

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Finding your Fundraising Strategy

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Strategies for Effective Fundraising

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Collaboration Among Foundations

Ethics

Research involving children deserves a special gaze from the ethical perspective. In such processes, children’s dignity, rights and wellbeing must be respected, regardless of the context. Researchers must provide the right support to children and make sure they are correctly informed and they can participate safely in the investigation. Consent for participation on research is a key requisite and requirements depend from the legislation of each country.

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Ethical aspects of research with children

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Ethical Research Involving Children (ERIC)

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Research ethics committees

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What is Ethics in Research & Why is it Important?

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What is research ethics?

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