You will receive news of EUROMAC’s work and reports of any studies and trials undertaken by partner institutes based on information from the registry.
WHAT IS THE BENEFIT FOR PATIENTS?
You will be contributing to the shared knowledge about McArdle Disease and the other included conditions. You may in the future be selected for invitation to join studies or trials on an international basis.
If you wish you can receive a newsletter about EUROMAC’s work and reports of any studies and trials undertaken by partner institutes based on information from the registry. If you choose to opt-in you will receive details of any other information that EUROMAC agrees to disseminate on behalf of partners or patient groups. For example, news of events or publications.
HOW SECURE WILL MY DATA BE?EUROMAC registry is held separately from this publicly accessible web site and is not be accessible by the public, search engines, etc. The registry complies with the confidentiality policies of the European Union and with national directives and regulations on ethical aspects of patients’ data processing. You can check out adopted regulations in the section dedicated to links of interest.The partner institutes of EUROMAC have a private intranet through which they are able to access the registry. This is a secure network with all passing data being encrypted and anonimized. If partners wish to download data from the registry, they are only be able to download anonymised data – i.e. none of the data is identifiable to an individual McArdle person other than by your own neuromuscular consultant, who, by logging in, will have access to your data for care purposes.
WILL I BE ABLE TO ACCESS DATA FROM THE REGISTRY?
No, you will not be able to access any data about yourself or any other patient in the registry. However, you will be able to access statistical reports that EUROMAC will make available from time to time. These reports do not include any details of individual patients. You will also be able to access reports on any studies and trials which have utilised information from the registry.
WHAT WILL I NEED TO DO?
You will need to supply your personal details and your doctor will need to supply your medical details. This has to include confirmation of the DNA analysis. (In the case of McArdle Disease this is of the PYGM gene that is responsible for the condition.) If this is not already on file you will need to arrange with your neuromuscular consultant to have this testing completed. Your consultant may also want to ask you some questions to help complete the EUROMAC required data.
IS THERE ANY COST TO ME?
There is no charge from EUROMAC for your entry into the registry or for holding your data. We anticipate that there will be no cost to the patient for their consultant’s work in submitting the necessary supporting information. However, circumstances may vary in each country. Please confirm with your consultant.
HOW DO I APPLY TO BE IN THE REGISTRY?
EUROMAC will be informing all neuromuscular consultants about the registry and explaining how they should go about registering patients. You should therefore contact your neuromuscular consultant. If you do not have a consultant, please contact EUROMAC who will put you in touch with someone who can help you.
|LINKS OF INTEREST:
The aim of the project is to identify as many patients as possible across all European countries and to collect important clinical and epidemiological data. We hope to create the largest international cohort of people with such rare conditions.
We are researchers in the field of neuromuscular disorders who investigate, at the clinical and research level, on glycogen storage disease type V (GSD V) (OMIM® number 232600), also known as McArdle Disease and other related ultra-rare muscle glycogenoses. We represent twenty institutes from across Europe, plus Turkey and the US, which make up the founding consortium of EUROMAC.
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