Educational materials, faqs, glossaries
ClinicalTrials.gov (English)
The sections “Learn about clinical studies” “How to read a study record” give information about the phases of the study, the types of the study, responsibility, participation to a study (included informed consent and the questions that a potential participant should ask before volunteering for a clinical study). The glossary is extremely complete.
Medline (English, Spanish)
This website offers high quality information about clinical trials.
AIFA (Italian)
This section provides a clear and exhaustive description about all the steps which are necessary to produce drugs (section “From labs to citizens”). The section dedicated to explanations about clinical trials is also very good.
American Cancer Society (English, Spanish)
This website provides a very well-structured and exhaustive list of FAQs. The document can be also downloaded as PDF.
AIMAC (Italian, but the original booklet is in English)
The website provides very clear information about clinical trials by translating a very well-made booklet about clinical trial edited by Cancerbackup.
EU (FP7projects) (6 languages but the linked blog is in English)
Very interesting link to a guest blog series on Scientific American called: “Molecules to medicine: Clinical trials for beginners”. The following posts are about clinical trials:
- http://blogs.scientificamerican.com/guest-blog/2011/10/06/molecules-to-medicine-clinical-trials-for-beginners/
- http://blogs.scientificamerican.com/molecules-to-medicine/2013/03/19/covering-clinical-trials-a-message-for-journalists-and-critical-readers/
- http://blogs.scientificamerican.com/molecules-to-medicine/2012/06/12/clinical-trials-for-beginners-ethics-pediatric-anthrax-vaccine-case-study/
- http://blogs.scientificamerican.com/molecules-to-medicine/2012/06/26/clinical-trials-for-beginners-recipe-for-a-new-drug-2/
This blog is a rare example of clinical trials explained to the public in a simple and captivating way, with history hints and journalistic style.
From this page is possible to access and download in open access the guide by the same author “Conducting Clinical Research” aimed at researchers but with a very interesting chapter on ethical issues.
FDA (English, Spanish)
The website provides very clear and complete FAQs and a good list of questions that the patients should ask before enrolling. A section is also dedicated to clinical trials on children, again in FAQs format.
At the end of basic questions, a feedback form is provided to rate the explanation and allow patients to directly ask which other questions they would like to be featured.
Cancer Help UK (English)
The website provides a very clear and complete section about clinical trials, both as FAQs and as plain explanation. An impressive number of questions to ask about studies are also displayed.
Centerwatch (English)
The website has an entire and very clear section dedicated to informed consent (the brochure can also be downloaded). The glossary is also very well structured and rich of terms.
IEO (Italian)
The website provides high quality and precise information to patients willing to enroll for a clinical trial. A lot of emphasis is given to privacy, informed consent form, patient’s rights as well as explanations about the different studies designs.
Partecipasalute (Italian)
The website has an in-depth section about clinical trials which also explains about rights and conflicts of interests and provides a very complete list of terms in the glossary.
CISCRP - Center for Information & Study on Clinical Research Participation (English)
The website provides an impressive list of FAQs and links to a Wall Street Journal Supplement, Media Planet, which features a “guide to understanding the need of research and participation” written in journalistic style from professionals to patients.
CFF - Cystis Fibrosis Foundation (English)
The website has an exhaustive glossary a PDF downloadable guide to informed consent which is very useful too.
NHS (English)
This website displays a rich section full of high quality contents on clinical trials.
Collaborative Institutional Training Initiative, CITI (English)
This website provides and accurate and exhaustive FAQs section.
National Institute of Health (English, Spanish)
This website provides complete and well-written FAQs and explanations. Particularly rich the educational resources section (Children and Clinical Trials, Elder patients and research).
Europa Donna (English, Italian)
The European Breast Cancer Coalition is an independent, no-profit organisation aimed at raising awareness on breast cancer with improved education, appropriate screening, optimal treatment and care and increased funding for research.
The Advocate’s Guide to Understanding Breast Research (English)
EUROPA DONNA’s advocacy work is grounded on evidence-based practice. This newly published guide teaches you how to recognize the best current scientific evidences and explains with clear and simple words the most important concepts of clinical research.
HIV i-base (English also available in Italian, Portuguese, Russian, Spanish)
A guide on HIV research that, besides explaining how clinical trials work and why they are important, discusses the results and the role of the advocates and community involvement in HIV research.
COMET (Core Outcome Measures in Effectiveness Trials) Initiative (English)
The COMET Initiative – an FP7 project – “brings together people interested in the development and application of agreed standardised sets of outcomes, known as ‘core outcome sets’. These sets represent the minimum that should be measured and reported in all clinical trials of a specific condition, and are also suitable for use in clinical audit or research other than randomised trials… COMET aims to collate and stimulate relevant resources, both applied and methodological, to facilitate exchange of ideas and information, and to foster methodological research in this area.” Read the COMET plain_language_summary and learn more about ‘core outcomes sets’, how they are developed and what the COMET Initiative aims to achieve.
Booklet on clinical research methodology (Italian)
Dispensa di Partecipasalute sulla metodologia della ricerca clinica
As part of its educational activities, promoted since 2008, the non-profit institution PartecipaSalute has published this booklet for representatives of patient and citizen associations who took part in the courses organized by the Italian portal for citizens’ participation to healthcare.
Written by experts and non-professional referees (for ensuring maximum clarity and usability), this booklet is now available for free download, in order to assist its dissemination and to collect clinical research materials to be promoted by ECRAN.
