Where will my data be stored?
In the questionnaire we ask you for some personal data and some information about your condition. Your data will be stored securely and no unauthorized people will be able to gain any information about you. All of the data held in the Global FKRP Registry is held securely on secure servers in the United Kingdom.
Who will have access to my medical records?
Staff in charge of the registry might need to gain access to your medical records to obtain information necessary to the project (for example we will need to ask your geneticist/physician for a copy of your genetic report and also information on your respiratory and cardiac function).
How will I be identified in the registry?
Your personal details (name, address etc.) have to be stored in the registry so that we can contact you if we need to inform you about possible clinical trials or anything else that might be relevant to your disorder.
This data will be stored in a secure manner and your records will be assigned a unique code. Your records will only be identified by this unique code. Therefore, researchers reviewing registry data cannot identify you personally from the information. Only the person in charge of the registry (Professor Volker Straub, Newcastle University) and persons explicitly appointed by him will be able to “de-code” the data to get access to your personal details.
Will my data be kept confidential?
Your data will be kept for an indefinite period in the United Kingdom, under the responsibility of Professor Volker Straub, Newcastle University.
Creating a registry requires the existence of a file containing a patient’s personal and medical data. This file will be subject to the regulations on data protection (national laws related to General Data Protection Regulation (GDPR) (EU) 2016/679). All information we receive from you will be treated confidentially. The information will be encrypted and stored on a secure server.
Third parties wishing to have access to the data in the registry (such as researchers or companies planning clinical trials or conducting research on new therapies) will only have access to anonymous information identifiable by a code. Before they are granted access even to this anonymous information, they have to have permission from the registry steering committee. Your personal data will not be made available to employers, government organisations, insurance companies or educational institutions, nor to your spouse, other members of your family or your doctor.
Can I withdraw and have my data erased if I change my mind?
Your participation in this project is completely voluntary. The data protection act grants you the right to access your own data and to rectify them or withdraw them completely at any time. Should you wish to withdraw your data from the registry you will be free to do so without having to provide any explanation. If you wish to withdraw, you should get in touch with the staff in charge of the registry.