English CDG Community at Rare Commons
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 prioritye 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 ou 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 imput 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 acces 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 familiy 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 authorisation of the manager of the community. After that, you will
have 30 days to mail 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 singed 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 Llibregat (Spain)
We want to acknowledge the support and efforts of
CDG Care in his 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 addresssing questions that families
throughout the US and Canada may have. This new family community environment
allows 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