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English CDG Community at Rare Commons

CDG Care- Rare Commons
Mercredi, 11 novembre, 2015

Rare Commons has launched an English Community of Congenital Disorders of Glycosylation (CDG). There was already a Spanish community, but now with the launch of the English CDG Community, more people can participate in the Rare Commons project.

What is Rare Commons?

Rare Commons is a research project at the Sant Joan de Déu Hospital in Barcelona focused on the biomedical study of rare diseases that affect children. This online platform eliminates geographical distance so that more patients can participate and that doctors can get a better understanding of the development of the disease, which hopefully leads to better management of CDG from an early stage. Families who participate may also suggest topics, or ask questions to help the research team determine the highest priority areas requiring the most research.  

The goal of the clinical research project is to learn more about the different types of CDG and create an exhaustive register of patients. The primary aim is to help support basic research projects that will involve the recruitment of patients for clinical trials.

Rare Commons compliments other research projects that need to know the natural history of the disease and collects data on patients that accomplish different criteria of inclusion.

Questionnaires

When you register with Rare Commons, you will get step by step instructions containing the information you need to complete the patient questionnaire. The questionnaire is comprehensive and typically takes approximately 8 months to complete. As a registered patient, you will receive information about a particular organ that could be affected by the disease, or other physical problems.

After reading each specific medical chapter you will be required to fill out a questionnaire that covers that topic. You will be asked for clinical data that you already know, or may be otherwise requested from a physician. A picture may be asked for, or for example, at what age has the patient accomplished major developments, such as learning to walk.

Parents of children with a rare disease are the authentic experts of the disease and with your collaboration we can learn more and improve the scientific knowledge of these types of ultra-rare diseases. We need your expertise to make progress and biomedical advances in research.

Inviting your doctor

You will also be asked to invite your different primary and specialty doctors to participate in this research platform. Doctors cannot participate on their own, but must be invited by a CDG family who is already registered in the project. This is to ensure the privacy of each patient.

The data input platforms for the families and doctors are independent. Clinicians are required to complete a different questionnaire on their patient with the aim to ensure that the most precise data and information is received on every case within the study.

Publication

After completing each questionnaire, you will have access to the key data for each questionnaire that has been received from all participating families. Also, as an example, the research team doctors will provide explanations of the graphs.  

The overall preliminary results will be published anonymously on the website of Rare Commons and the information about the complete Rare Commons project will be published in medical journals at the end of the project. The results will be published in open journals with the aim to facilitate accessibility of the information to parents and clinicians.

Medical questions

There is also a private section within the family community where parents can ask questions and address concerns they may have regarding the research or appropriate management of the disease. These questions will be answered by Dr. Mercedes Serrano (IP of the project) and may be discussed and shared with other medical experts.

For example, we have currently received questions from Spanish families about hyperglycemia, mouth sores, stroke-like episodes, etc.

Social Commons

For every disease in Rare Commons we have a private social network, named Social Commons. It is similar to Facebook.  In this forum, participating families can exchange information with other families who are registered and participating in the research project. .

If you would like to join Rare Commons, you can register on the website of Rare Commons; www.rarecommons.org/en/patient/register.  Your registration will be completed under the authorization of the manager of the community. After you register, you will have 30 days to mail in the completed and signed Informed Consent.  To facilitate this process, if you are sending the form within the United States or Canada, you can send the completed and signed Informed Consent via USPS to:

CDG CARE
Andrea Berarducci
6035 Farthing Drive
Colorado Springs, CO 80906

If you would like to send the form directly to Sant Joan de Déu Hospital in Barcelona, please use the following postal address:

Hospital Sant Joan de Déu
Departament d’Innovació i Rerecerca
Ref. Rare Commons
Passeig de Sant Joan de Déu 2
08950 Esplugues de Llobregat (Spain)

We want to acknowledge the support and efforts of CDG CARE in this project to help spread the word about the biomedical research project of CDG on Rare Commons.  Andrea Berarducci, President of CDG CARE, is also serving as the North America Country Coordinator for Rare Commons and will assist with facilitating information, preparing presentations and addressing questions that families throughout the US and Canada may have.  This new family community environment now allows for the participation of any English speaking parent of a child with any type of CDG from around the world.  

If you need any additional information, please email us at the following address:  rarecommons@hsjdbcn.org

Dernière modification: 
11/11/2015