MENKES PATIENTS REGISTRY

As Menkes is a rare disease and it is difficult to find clinical cases for research, we strongly encourage all patients’ families, particularly those living in Europe, to contact us to be part of the First Menkes Patients Registry to facilitate relevant information for scientists working in accredited research institutions. We also invite accredited researchers worldwide to contact us. 

Please fill out the form below :

Registry status: 45 cases out of 11 countries

dd/mm/yyyy
Please provide name, address, telephone, and email.
Please provide hospital name, telephone, and email.
Menkes International Association (MIa)

Data Protection Notice and
Third-Party Data Transfer





MIa´s primary mission is setting up a Menkes international patients ‘registry to enhace research to combat Menkes disease. It is a matter of extreme urgency to put in place an international registry to assist researches around the world as the life of many children is at stake.


All data processing by MIa as a data controller and by third parties acting as data processors will take place in accordance with the following terms:





Purpose and lawfulness of the processing



Personal data provided by the Menkes patient´s families in the form of patient’s medical history or any other form will be incorporated to an international registry that will be made available to accredited researchers and verified research institutions which may share these data with reliable third parties for the same or compatible purposes. Provision of access will be condition to the favourable opinion of a Scientific Committee in place for these purposes.



The provision of the patients’ records by the families equals to a fully informed and freely given consent of the said processing of personal data.



When the data will be processed by researches and research institutions, MIa will not be considered a joint controller for those processing operations and its role will be limited to facilitate any necessary contact between those researches and the patients’ families.






Categories of data being processed





The personal data collected and shared with researchers and researcher institutes relates to patients of the Menkes disease in the form of patient’s records or any other form as well as the contact details and related information of family members of those patients.





International transfers




As the fight against this disease is an international endeavour, the data will be transferred to third countries outside the European Economic Area. If researches and verified institutions are not located in countries deemed offering an equivalent level of data protection, the transfer and subsequent processing will take place on the basis of the research exception provided in the General Data Protection Regulation.






Contractual obligations and security measures




MIa undertakes to sign contractual arrangements with researches and research institutions having access to the registry stipulating that:



the data will only be used and shared with legitimate and trustworthy parties and for the only purpose of combating the Menkes disease,
the data will be subject to state of the art security measures to prevent undue access o dissemination; in the case of a known data breach, MIa undertakes to take urgent action and to inform family members where appropriate.





Exercise of data protection rights



Access, rectification, deletion, erasure and any data protection rights can be exercised by sending an electronic mail to the following address:



As the registry will be located in Spain, any complaints or request for investigation can be submitted to the Agencia Española de Protección de Datos.