What is Share4Rare?
Share4Rare is a digital platform designed to facilitate the research in rare diseases by connecting patients, clinicians and researchers and collecting their expertise while we built a global community.
The platform has 3 areas with different purposes:
Awareness and empowerment. By providing patients and caregivers with clinically relevant content accessible to all. We aim to educate them so they can become experts in their conditions and foster research by getting involved with clinicians and researchers. Better management of their condition it’s essential for improving their quality of life.
Shared knowledge and experience. In Share4Rare you will find a new model of a digital community based on your clinical data, interests and expertise. We want you to become a reference for other people and find the support you may need each step of the way. Every interaction can have the added value to arrive at the right pool of people to help you, thanks to a targeted system of questions and answers designed with artificial intelligence algorithms.
Donate clinical information. Only you have specific knowledge about your disease that could be important for advancing research. By answering clinical questionnaires, you and others like you will be providing information about the natural history of your disease and other relevant aspects such as quality of life or patient-reported outcomes. This will help develop a new pool of knowledge which can be used as a basis for facilitating new research projects.
What are the Share4Rare main motivations?
The projects’ overarching goal is to break the vicious cycle of the rarity, due to the limited number of patients very scarce research opportunities in the field of rare diseases. Share4Rare is based on the pillars of the collective intelligence, the value of the knowledge coming from the crowd, and it’s gathering in a social innovation platform.
A cross-cutting model of collaboration in the digital field is needed to erase the geographical and language barriers that exist among the different countries and to increase awareness about rare diseases. This approach will connect needs and stakeholders in the virtual world and offer a unique environment to improve the quality of life of the population suffering rare conditions. In Europe, they represent a significant number: around 30 million people. In addition caregivers and other relatives, clinicians and other professionals can be beneficiaries of this collective awareness platform for social innovation (CAPS) involving them in the collaborative model based on the principles of the health crowdsources research studies.
Who are the Share4Rare partners?
Sant Joan de Déu Research Foundation was created in 2002 to provide a framework for the research activity which is carried out in the biomedical and social spheres at Sant Joan de Déu Maternal and Children's Hospital in Esplugues, at Sant Joan de Déu Healthcare Park in Sant Boi de Llobregat and in others. We approach our research as a participative and interdisciplinary process in which the interaction between our healthcare professionals and society. The Foundation's fundamental aim is to contribute to the improvement of people's health and welfare by fostering, supporting and coordinating research and innovation. We strive to achieve efficiency and to strengthen our networked activities while always bearing closely in mind our institutional values and ethical commitment.
Asserta Global Healthcare Solutions SL brings together a team of professionals with years of experience in clinical practice, health management, teaching and research, who are putting their knowledge and expertise at the service of improving processes and results in the healthcare area. While becoming a reference in the Medication management processes, and improving healthcare processes, we have opened a new line of business related to innovation management, and social impact measurement in international projects. We have consolidated our expertise in Organization and Strategy, Social Innovation in International environments, Real World Data analysis, and international research consultancy. Our team also includes experts in planning and strategic management, quality management, technology transfer, financing, and information and communication technologies.
The John Walton Muscular Dystrophy Research Centre is part of the University of Newcastle upon Tyne and works to perform world-class translational research to bring diagnosis, care, and therapy to people with neuromuscular diseases. As a group, we have developed a close and important link between research and clinical activities and we actively pursue new partnerships with other stakeholders such as patient organisations, regulators and pharma. The John Walton Muscular Dystrophy Research Centre is structured around five important strands of activity – clinical care, clinical research, diagnostics, basic research and strategic partnerships and networking – but all are strongly interlinked and working across these teams is key to our success and impact in the neuromuscular field. To complement our neuromuscular expertise, the centre is also a key actor in European initiatives for rare diseases more broadly.
Melanoma Patient Network Europe (MPNE) is a loose multidimensional network of European national and regional Melanoma patient forums advocating on behalf of patients and operating across language barriers with shared principles. Our mission is to systematically address problems faced by the European Melanoma community (Adult and Paediatric, Rare and less rare) in a constructive, result-oriented and collaborative manner by providing a platform for advocates to interact and through targeted capacity-building.
Òmada Interactiva is a company with 15 years of experience in consulting, support, design, creation, and development of interactive solutions, developed mostly on open source software. We are a multidisciplinary team focused on offering a solid, innovative and agile approach to web development, communities design, process management and online marketing.
Health, education, and NGOs are the three major axes we have specialized in.
The Synergist is a social venture that addresses a growing societal need for collaboration by building partnerships to accelerate societal impact. The Synergist acts as an independent, neutral backbone and incubator bringing together the right people, organizations, and institutions together to focus on solving societal issues both personally and with technology tools.
Universitat Politècnica de Catalunya-BarcelonaTech (Technical University of Catalonia, UPC, http://upc.edu) is a public institution dedicated to higher education and research, specialised in the fields of engineering, architecture and science. It offers higher education in technical fields (69 degrees) and it is composed by 23 schools in 8 different campuses, with a total of 35.000 students and 2.780 researchers. The UPC is ranked 1st in Spain in the Field of Engineering and Technology. UPC participates in Share4Rare from the Bioinformatics and Biomedical Signals Laboratory (B2SLab) at http://b2slab.upc.edu with data analysis technologies.
World Duchenne Organization/UPPMD is a worldwide organization owned and managed by parent project organizations set up by parents of children with Duchenne and Becker Muscular Dystrophy in many different countries all over the world. It is dedicated to finding a cure and viable treatments for DMD, to promoting good standards of care, and to informing parents around the globe.
Why join Share4Rare?
By registering for Share4Rare, you will be joining an online and global community designed by and for patients and families affected by a rare disease. Share4Rare allows people to connect with others with the same disease. It also connects people who may have a different disease but similar symptoms. Connecting with others on Share4Rare helps to break the isolation often associated with living with a rare condition.
The information that you enter into your profile during the registration process will be used to match you with others who are ‘like you’. If you decide to make your profile visible in the private messaging tool, you will be able to communicate directly with other users, starting with those who most closely match your profile.
You will also be able to ask questions using the community Q&A tool and respond to questions asked by others.
As a registered user of the S4R platform, you will also have the opportunity to answer some additional questions about your condition and your experience of living with a rare disease. The information you provide will be used to help form a basis for new research projects. You will also receive aggregated data showing your position relative to other users.
Are clinicians involved in Share4Rare?
Clinicians are involved in several ways:
They are developing the publicly available medical content, they are developing medical questionnaires to collect clinical information or other relevant data to a better understanding of the users’ rare diseases.
They can be invited by their patients to complete medical questionnaires specifically addressed to them and to collect their expertise.
They are involved in the analysis of the medical information collected from the different rare diseases with a research project ongoing in Share4Rare.
They can submit future research projects to be performed using clinical data
Will I have access to clinicians in the Share4Rare community?
The Share4Rare community is only for patients and caregivers, you will not find clinicians in the community unless they are patients or caregivers themselves. If you address a medical question that may be general and won’t require the examination of the patient by a clinician, the Share4Rare staff will take care of it and provide the answer after requiring the advice of the medical experts involved in the research initiatives of the platform.
The Share4Rare community will never substitute the professional council of a clinician. We recommend that you make an appointment with your healthcare provider if you need specialized care. The main aim of the community is to facilitate the interactions among the users. Share4Rare is not going to provide any kind of telemedicine service due to the need for the examination of the patient and the access to the previous medical records.
Is the website compatible with mobile phones?
Absolutely! Share4Rare has been designed to be compatible with mobiles and desktops. This will allow you to access the public content anywhere, participate in the community at any time and answer your clinical questionnaires whenever you can.
Who can join Share4Rare?
The platform is open to adults over the age of 18 who are living with a rare condition and carers of children under the age of 18 who are living with a rare condition.
How do I join Share4Rare?
The registration process has been designed to guide you along the different steps.
Step 1: Personal information about the user. This is information about the user registering for the platform, either a patient or a caregiver of a minor.
Step 2: After receiving a confirmation email, you will need to set up your password.
Step 3: Patient’s information. If you said that you are an adult patient, this will be almost completed. If you are a caregiver, you will need to add information about the patient you are taking care of.
Step 4: Symptoms. This will probably be the most important step in the registration process. The symptoms you enter in this step will be used to calculate your similarity to other patients and will target the questions you see in the community to other users with high probability to help you. Do not worry if you want to add or change information later, you will be able to do it when editing your profile.
Step 5: Legal terms. These are claims to ensure your usability of the platform.
Once you are registered, it is important that you are validated. To this end, you will need to go to your patients and edit them. Please upload the correspondent signed informed consent along with your ID document and medical proof of your diagnosis. This process will ensure that the Share4Rare community will be a safe and secure space only for patients and caregivers. If you have not received the diagnosis yet, you can provide us any medical document where this situation will be described.
Can I join if I am less than 18 years old?
Share4Rare is only available to people who are 18 or over, following the GDPR that applies to a platform based in the donation of medical information and in the interaction with other adult users.
Can I register if I am not affected by one of the listed diseases with a research project ongoing in Share4Rare?
Yes, you can! Share4Rare is open to everyone affected by a rare condition. By adding your symptoms to your profile, you will find a community of people like you.
Regarding the listed diseases, Share4Rare is currently in its pilot stage and it is based in the Orphanet database. Specifically for research purposes, we are currently piloting two disease groups of conditions: paediatric rare tumours and rare neuromuscular disorders. This means that research questions and medical chapters will be developed to cover those initially but as we grow, we will be able to incorporate other conditions to the research-focused part of the platform.
How many symptoms should I list?
List all of your symptoms during the registration process. This is especially important as they will be used to connect you with others in the community. The more symptoms you list, the better. You can add or remove symptoms from your profile at any time, and it is important for this information to be accurate and up to date. The list of symptoms of Share4Rare is based in the Human Phenotype Ontology classification, that is very accurate and offers symptoms accordingly with the different systems of the body affected by them.
Why should I add clinical information for myself or my child?
The clinical data you upload from yourself or your relative will be used to:
Validate you as a user.
Index your information to participate in one of the pilot active research projects in the community (see diseases).
Store your information for research purposes and make it available for other research projects when submitted, analysed and approved. You will have the opportunity to include your data in new studies as they are added to the platform.
We believe that collecting patient information in one place and offering it to the research community is the best way to promote research and to improve the lives of rare diseases patients. Remember that at any moment you can exercise your rights according to the General Data Protection Regulation (GDPR).
How do I submit information for myself or my child?
You will have the opportunity to upload information for each patient profile you create. Click on the correspondent patient, edit his/her profile and submit the disease, symptoms and documents. This information will be used to help you to identify in the community other people with similar symptoms to you or to your child, and also to facilitate the interactivity in the community of users connecting your questions with the peers that potentially can help you.
Another way to submit information for your patients is in the clinical questionnaires created for research purposes. Go to section Share4Rare Clinical Questionnaires for more information.
How do I submit data from more than one relative in my family?
In your profile, you will find a section called My patients. You will be able to add as many patients as you need, and each patient can be associated with different diseases and/or symptoms. New patients can be attached to your profile at any time.
Can I register to be a patient and a caregiver at the same time?
Yes, you can. You will add information for one profile during the registration process. After you have registered and logged in, you can upload information for other profiles.
Can I access my child’s information if my partner has already registered him/her?
For security reasons, only the user that registers a patient has full access to his/her data. No other users can see them. Nevertheless, your partner can grant you reading permissions to your child’s profile as a patient, which means that you will see his/her name and disease in the patients' list of your profile, and you will be able to access data derived from the studies in which he/she takes part. However, you won’t be able to see either the primary data of his/her profile nor the answers provided for said studies.
Can I attach diagnostic test results or images to my patient profile?
Yes, in fact, this information is necessary to validate you as a user.
If you want to add more documents, there is an option to add more to your patient’s profile. You can upload as many documents as you want. This information will be meaningful for the research purposes of the Share4Rare.
Access to the instructions to get validated here:
Will my diagnosis information or my child diagnosis information be verified? How will it be verified?
Your information will be verified by someone on our Share4Rare team. Our commitment is to check and validate you or give you feedback about the process, within 48 hours of the documents being uploaded.
Why should I upload my personal ID?
We will check your personal ID as part of the validation process when you register to use the platform. This will ensure that we are building a safe and secure space for real patients and caregivers.
Can I invite other people to join?
Of course! The more people using the platform, the better. Rare diseases have a scarcity of patients for each condition. By inviting people you know with the same disease, you can help build a base to perform ongoing or future research projects.
The patients or caregivers that you will invite will benefit from being part of a global community of people like them.
You can also share the website through the Share button. This is available on every page at the right margin of the screen.
When and how can I invite my doctor to join?
When you take part in research, you will have to complete clinical questionnaires. Some of those will need the intervention of your doctor. To manage that requirement, we are about to deploy a system to invite your doctor via email from your Share4Rare profile. This will send him/her a special link to access the platform that will help us link you both and it will give the chance for him/her to complete your clinical questionnaires.
What if I need help gathering my personal medical information?
You can email us at firstname.lastname@example.org or use the contact form on the webpage and we will help you.
What information is visible from my profile?
The Information from your profile that will be publicly visible for anyone in the Share4Rare community is your biography, why you are here, patients’ organizations you belong to, languages, your expertise, your social media channels and of course, your nickname and picture or avatar!
All other information in your profile is private and only you can see it. Information such as disease or country is used for research purposes.
Remember that only you can decide how much information you share about yourself.
How do I change or add my disease(s) or symptoms?
You can access your profile by signing into Share4Rare. You can easily change or add disease(s) or symptoms from your profile page.
Do I have to share my biography and social media profiles?
You don’t have to. You can decide how much information you share with other users of the platform.
How can I change my username/email?
You can’t change your username or email. If you have some sensitive information that you would like to change, please contact us at email@example.com.
How can I change my password?
You can access your profile by signing into Share4Rare. You can easily change your password from your profile page.
How can I close my Share4Rare account or a relative who has passed away?
Please contact us at firstname.lastname@example.org and we will take care of this for you.
What will happen to my information after my user/patient profile has been deleted?
For legal reasons, we will save your information in our database. Your public profile and patient information will be deleted from the Share4Rare community and only anonymous activity will remain (your username will not appear anymore but the questions or answers will remain).
How is the Share4Rare community different from health forums?
Share4Rare gives you an opportunity to connect with others living with a rare disease, even if they do not have the same diagnosis. Share4Rare uses the information you provide in your profile to match you with others who are most like you. This is a different approach from health forums which often only focus on one disease or in general topics (palliative care, psychological support, etc.). By participating in the Share4Rare platform, you will also have the opportunity to answer questionnaires which will be used to help advance research in areas such as the quality of life of individuals affected by a rare disease.
How does the Share4Rare community work?
The Share4Rare community allows users to ask open questions to the community. It then takes advantage of the great amount of structured information available in user profiles to present those questions to the users that are more likely to be interested in them or to have a meaningful answer to them.
Does Share4Rare focus specifically in the mentioned diseases?
At the moment, Share4Rare is focusing its research projects in the following diseases: paediatric rare tumours and rare neuromuscular disorders. However, some studies and questionnaires are transversal to these and other diseases or independent from the disease. Independently, the community is not limited by the listed diseases so If you are 18 and over and affected by a rare disease, we encourage you to register for the platform and help us expand to include other diseases. As the platform develops, new disease areas will be added, expanding the reach of the community and the information and tools available.
How the questions are prioritized to the users in order to be answered? How this probability is calculated?
The relevance of each question launched by each user is calculated by a heuristic-based statistical system that computes an index of similarity between the user that makes the question and each potential receiver based on the information available in their profiles. The higher the index, the more likely the question is to be relevant for the potential receiver and, therefore, the sooner it will appear in his or her question feed. The feed of questions (with their answers, if they have any) for each user is built having the information about question relevance in mind.
Currently, the probability is calculated based on the symptoms indexed from every user. That is why it is so important to add as many symptoms as you recall.
When will I have full access to the Share4Rare community?
You will have full access to the Share4Rare community once you have been validated as a user with full rights, meaning: having the informed consent correctly signed and with the attached ID document and medical proof from your clinician/institution of reference. This is necessary to make sure we all understand the legal terms and to build a safe and secure space for real patients and caregivers.
What are the Share4Rare community guidelines?
The Share4Rare community guidelines are the rules that regulate the functioning and behaviour in our community. Please, access and read them HERE if you have any questions.
Why did Share4Rare choose a smart algorithm to build personalized communities?
The algorithm is designed to help users find content and people of interest to them, as an answer to a requirement we detected during the planning of the project in focus groups with patients and caregivers.
Some patients and caregivers affected by rare diseases were invited to participate in creative workshops within the Share4Rare team and express their needs so we could identify real problems. This led us to create this special model of community where we have tried to build as few boundaries as possible so everybody can share their knowledge and express their feelings or worries.
With this approach, we hope to empower patients and families to share their experiences and ask for what they need. A community built by patients for patients.
Why is important to answer questions from other people?
Everyone participating in the Share4Rare community has a unique experience of living with their disease and managing their symptoms. By answering questions from other people, you will be sharing your knowledge and experience not just with the person who asked the question, but with the whole community. By actively participating in the community, you will enhance your profile on the platform and connect with others to expand the pool of knowledge available.
How can I benefit from submitting a question to the Share4Rare community?
When you submit a question, it will be targeted to individuals who have expertise in that particular area, as well as being seen by the entire Share4Rare community. You will be more likely to get an accurate answer to your question because of our targeted community.
Will I be contacted privately? Why are there patients that I can contact and some others who I can’t?
When you create your profile, you have the option to make it available to other users and to be contacted by them using the direct private messaging system. You can opt-out of this at any time in the legal claims in your profile.
At the same time, you will only be able to contact people who have accepted this claim and/or has been validated.
What are the user mark badges that appears in some profiles? How do Share4Rare badges work?
The user badges are a way to identify individuals with different levels of activity and expertise within the platform. They also identify different user types, such as members of staff. You can consult all the badge types and how they work here.
How does Share4Rare prevent bad input or poor suggestions? How can I report someone/something?
Share4Rare has a reporting system for content and users available for the community. When a question does not abide by the rules in the community, it can be reported by clicking the 3 vertical points button and different options will appear. This will ensure that the content is reviewed by the Share4Rare staff.
Similarly, users can be reported by getting into their profiles and clicking the same button. Reasons will be different but the process is the same.
In any case, make sure you have reasons to report that content/user: it may mean that this user is banned from the community.
Is there a moderator in the community?
There is not a moderator role in the community. The Share4Rare staff will take care of the community and also the Share4Rare ambassadors who have expertise living with different rare conditions and promoting advocacy in this field. Users can flag issues with members of staff through the reporting system.
When should I report someone/something for misconduct?
Can I modify or delete my questions or my answers?
Every question or answer in the community has a button with 3 vertical points showing the available options. You will be able to modify your questions, but not delete them as they may have open interesting discussions with answers from other users that must be kept. You will be able to delete answers, but not modify them. You will be able to rephrase them and save the corrections.
Share4Rare Clinical questionnaires
Why should I answer clinical questionnaires?
Rare diseases have the problem of affecting only a few people, each one with a low prevalence in the population. Researchers and clinicians all around the world are interested in doing research for these patients, but they are not able to reach enough people to have significant data. That is why building a central place to collect clinical information so professionals can consult and ask for it is essential. The clinical questionnaires are the tool that Share4Rare uses to collect and gather relevant medical information from adult patients and caregivers.
How will my information be used?
Your information will be collected and processed together with other patients so we can build aggregated and anonymised clusters of data per diseases. This aggregated data allows you to see where you sit compared to your peers. Aggregated data across the questionnaires can be made available to researchers which a) helps to shed further light on these conditions and illuminate how they impact on patients and b) will hopefully inspire them to formulate new research questions or launch more detailed research projects to which you may be invited to participate.
Will I be rewarded for participating?
You will be able to access your clinical data in an innovative way where you will be able to see where you stand compared to people affected by the same diseases like you. At the end of the research project, a professional will produce a report on the main conclusions and this will be shared with all the participants of the questionnaires.
When will I see my information represented?
Participants in research projects will be able to access the represented data when a questionnaire is completely answered and finished or when it closes. The most meaningful information collected in every questionnaire will be reported to the users with a statistical representation that will allow them to see where they are situated in the general pool of information collected.
How can I see my information is represented?
Go to your questionnaires/studies and you will be able to access your data.
How effective is giving my healthcare information?
You will be providing the opportunity for clinicians and researchers all over the world to study and base research projects on it. We cannot ensure it will be directly effective but we believe it is the best way to promote and increase research in rare diseases.
How do I know that the information I’m getting is accurate?
A specialist team of data scientists involved in the project will be analysing the information provided by you. This aggregated data will be then analysed by committed clinicians we have already involved in the open studies in the platform. We will open more disease research projects once we have a team of professionals involved and compromised with it. This is how we ensure the reliability of the results.
Will my information be used for clinical purposes?
Yes, your information will be used for research purposes: getting to know your diseases better, the origin, evolution, symptoms, prognosis, etc. This is the basement for pushing forward clinical outcomes: diagnosis, treatments, clinical trials, etc.
Will I have access to further treatment as a result of donating my clinical information?
We cannot commit that your treatment will change because of getting involved in Share4Rare. Access to approved treatments is out of our scope and it’s based on the national regulations of every country managing the corresponding health system. Access to clinical trials requires to accomplish specific inclusion and exclusion criteria and other questions linked to the recruitment process. For both previous purposes, you need to contact with your doctors.
How much time do I have to answer the clinical questionnaires?
It depends on the questionnaire: there are some open for a limited time, specified at the start, and there are others that can be answered anytime. You will have this specification in the open summary of the questionnaire.
Can I use the same information in more than one questionnaire?
Every questionnaire is intended to be different but it is possible that some information may be redundant. Please make sure to include all the requested information so our team of experts can completely analyse and ensure that it meets the required minimum standards of quality.
What if I incorrectly answer a questionnaire?
You will be able to modify your answers as much as you want/need until the questionnaire is closed and you submit the information. Once the information has been submitted, you will not be able to change it manually.
How does the Share4Rare tag system work in the medical questionnaires?
Every time you complete a questionnaire, you will gain a tag related to it. This tag will connect you in the Questions & Answers community to other users that have the same tag so you will be accessing subcommunities with deeper knowledge on an issue and/or more chances to share experiences and create a debate. You will not be able to see the associated tags but these questions will appear in the community marked as In your study.
Will I have clinical questionnaires even if I am not associated with one of the diseases mentioned?
All users will be able to answer clinical questionnaires, as the first step for promoting open research communities is a basic level of information. Once we have identified a group of related patients from the same disease and collected a minimum amount of data, we will be able to promote the creation of more studies in the Share4Rare platform.
Also, users will be able to provide information about transversal topics in such questionnaires as quality of life, patient activation measures, palliative care, etc.
Are these questionnaires part of a patient registry?
A registry is created for the systematic collection of data intended to answer a particular question or questions. It may be dedicated to collect epidemiology information, to understanding the natural history of diseases, etc. The Share4Rare questionnaires are not part of any registry, nor does the S4R platform function as a registry. However, by capturing patient diagnoses and clinical features (phenotype) in standardised ways using particular ontologies, the platform is seeking to collect this data for research purposes.
Is this compatible with being in a registry?
Submitting your clinical data to the Share4Rare community and registries are two complementary things. In fact, we recommend that belong to your disease registry in your country or consortium in parallel to submitting your information to Share4Rare. The information will be different and both are needed to improve and change the world of rare diseases! In any case, once you will perform the registration process in S4R we will ask you about if the patient is currently part or not of a patient registry, this information will allow future opportunities of collaboration.
What is the Share4Rare newsletter?
The Share4Rare newsletter is sent out to subscribers by email. It provides up to date information about Share4Rare and of more general interest information to the rare disease community.
Who can subscribe to the Share4Rare newsletter?
Anyone can subscribe to the newsletter. Just complete the form on the Share4Rare website here.
What is the frequency of the Share4Rare newsletter?
Our newsletter is launched bi-monthly (every 2 months). Subscribe here to receive our latest news!
Does it cost money to subscribe?
The newsletter is free to all subscribers!
How do I cancel my subscription to the Share4Rare newsletter?
To cancel your subscription, simply click on the link at the bottom of the newsletter.
Does it cost anything to submit my clinical information in Share4Rare?
No, it does not. Our aim is to collect clinical data for research purposes only and we need you all to create the biggest pool of data on rare diseases.
Can I donate to Share4Rare?
We will soon create a fundraising section in the meantime you can contact us by email: email@example.com
Is sharing information in Share4Rare safe?
Yes, the legal responsible and coordinator of Share4Rare, the Sant Joan de Déu Research Foundation in Barcelona, has made sure to build a secure system. Data will be saved according to Spanish law and the GDPR regulation. For more details, see the legal claims here.
How does Share4Rare protect my data?
All data are stored in a secure server in Sant Joan de Déu Hospital network. The network has very strict and specific security measures. However, any user can ask to be granted access to change, rectify or delete his/her own data, and a procedure is put in place to do so.
Your data and, more specifically, the data of your patients will never be shared without your consent and after strict scrutiny of the use, they will be put to. You have to approve this. This includes the researchers that organize studies: they will only have access to anonymized, aggregated and derived data, and will never see your profile information (except the one that is publicly available for any other user in your profile that is general and optional information), your raw answers to questionnaires, or any other pieces of data deemed sensitive.
Will Share4Rare share my information?
No, we will never share your information. We will accept requests to collect anonymised data from researchers and clinicians, or other interested stakeholders fostering research in rare diseases. In this case, we will ask you first if you want your individual information to be included in that pool. Ownership of the medical information is the adult patient or the caregiver of a paediatric patient. ou will always be asked to re-consent for new uses of your information (even anonymous).
Why should I join Share4Rare? What will be my role in the Share4Rare platform?
As a clinician, you can be invited by your patient to complete his/her questionnaires. This will give you access to a bigger community of people and you will be able to produce more clinical questionnaires to help the research community to collect relevant data.
Will I have access to my patients’ data and to other patients’ data?
You will have access to your patients’ data and only if they invite you to do so.
Can I also participate as a researcher?
Of course, you can! In fact, this is possible if you are a patient, a caregiver, a clinician ora researcher. If you want to submit a project and request some information to base your project on, contact us at firstname.lastname@example.org. A committee of experts will be analysing the petitions received to setup a new process or to request aggregated and anonymised data of the ongoing project.
How can I use Share4Rare for my research projects?
You can ask for aggregated and anonymous information from your disease of interest which you can use to uncover patterns and build your hypothesis. A specific committee will analyze your request, its objectives and its impact on the rare disease community. Only the information authorized by the ownerships of this data, after their anonymization and aggregation, will be shared with you.
How do I submit a research project?
If you want to submit a project and request for some information to base your project on, please contact us at email@example.com. A committee of experts will be analysing the petitions received and aggregated and anonymised data will be shared after approval.
What should I give back in return to Share4Rare?
The results obtained based on the Share4Rare data will be shared with the users involved in the community and the Share4Rare platform needs to be mentioned in your publications.
Why should I take the results from these questionnaires seriously?
All the information we gather and that is shared with researchers has been curated and analysed by our team of data scientists and clinicians. The questionnaires have also been developed and adapted to accomplish the objective of collecting data in a clear and understandable way for patients and caregivers, conforming to standards of quality and readability.
How should I proceed to reference Share4Rare in a research project?
Share4Rare should be mentioned as a project receiving funding from European Union’s Horizon 2020 programme under the Grant Agreement 780262.
Who should I contact to request information for a press article?
Please contact us at firstname.lastname@example.org if you need more information.
Can I use the press notes in the Share4Rare website?
Yes of course you can. It is better even if you notify us at email@example.com about where you are publishing it. Thanks!