IAHCRC-CLOUD Platform

A Data Sharing Service for the Studies of the IAHCRC International Consortium on the Rare Diseases of the ATP1A3 Gene


PROJECT

The IAHCRC-CLOUD Platform is a ten years project started on September 2017, coordinated by the IAHCRC Data Manager Dr. Rosaria Vavassori and carried by the Informatics Team of the Euro Mediterranean Institute of Science and Technology (Palermo, Italy), a member Center of the IAHCRC Consortium. The Platform is a service for the secure collection, hosting and sharing of the data for all the Studies and Projects carried out by the IAHCRC Consortium.

FUNDERS

  • Patient Associations for Alternating Hemiplegia of Childhood: Cure AHC – USA www.cureahc.org; AHC Association of Iceland - Iceland www.ahc.is; AHCUK – Great Britain www.ahcuk.co.uk; AHC Vereniging Nederland - Holland www.ahckids.nl; AFHA - France www.afha.org; AESHA - Spain www.aesha.org);
  • Euromediterranean Institute of Science and Technology (IEMEST) - Italy www.iemest.eu.
  • Further co-funders would be desirable to ensure the sustainability of the Service (hosting, maintenance and development of new features) in the medium and long term.

AIMS

Implement an International Platform for the data collection and sharing for the collaborative studies of the Clinical and Basic Research Centers belonging to the IAHCRC Consortium, involved in research and treatment of the rare neurological diseases caused by mutations in the ATP1A3 gene (Alternating Hemiplegia of Childhood – AHC; Rapid Onset Dystonia and Parkinsonism – RDP; CAPOS Syndrome).
The data collected in the Platform will be managed in full compliance with the rules defined in the Charter of the IAHCRC Consortium, based on international ethical standards and national and international regulations on data privacy and security. Thanks to the implemented workflow, based on principles and methods of platform cooperativism and patient engagement, the data can thus be collected in the Platform and shared in an ethical and informed way by all actors involved in the biomedical research process (clinicians, patients and basic researchers, scientific and academic institutions).
In particular, the data can be re-used safely and effectively for an indefinite number of studies and projects carried out by the Centers of the IAHCRC Consortium, in collaboration with patient associations and other external, public and private bodies, at both international and national levels. They can also be made accessible for larger-scale projects, always based on data sharing policies jointly-agreed by the Assembly of the IAHCRC member Centers and the patient representatives of the AHCIA International Alliance.

EXPECTED RESULTS

In the short term, the Platform is serving the data collection for the OBSERV-AHC Study (Prospective Observational Natural History and Therapy Study on AHC), which has been launched in the third trimester 2018 and will last for four years, with the Scientific Coordination of the Neurology Clinic at the Duke University (Durham, NC USA).
Moreover, a Video Library has been implemented, containing the videos uploaded personally by the patients' caretakers and reviewed by a group of international experts, to classify the paroxysmal episodes characteristic of the ATP1A3 diseases and the other movement disorders associated. This video library can be used for educational and training purposes by the members of the IAHCRC Consortium, upon authorization of the Scientific Coordinators and always with the informed consent of the patients.
Along with the data already produced by previous IAHCRC studies, which will soon be imported into the Platform, with the data produced by the OBSERV-AHC Study and those produced by other IAHCRC studies that will be launched in parallel, a database will be created in the medium and long-term, usable for larger-scale studies on the ATP1A3 diseases: genotype-phenotype correlations, natural history, clinical trials for new candidate compounds, quality of life. This database may also be used to develop Guidelines for the Assistance to the Patients, and for other purposes of dissemination and professional and academic training. 

PARTNERS

Basic Research and Clinical Centers member of the IAHCRC Consortium; Patient Associations of the International Alliance AHCIA.

ACTIVITIES AT IEMEST

The IEMEST Institute coordinates the whole project and develops the software application, using the development tool “RedCap© Electronic Data Capture Tool”. The Institute is also providing the hosting and maintenance of the Platform, and is in charge of the data management, upon appointment of Assembly of the IAHCRC member Centers.

 

Read the Invitation to the Press Conference on the IAHCRC-CLOUD Project (IEMEST, October 2018)

 

 

Privacy policy

Privacy policy

1.1 Privacy Policy

This website is intended exclusively to provide information about the activities of the IAHCRC International Research Consortium and is managed by the Data Manager appointed by the Scientific Coordinators of the Consortium, on an individual and voluntary basis.
This Privacy Policy Notice explains how, in his role of Data Controller, the IAHCRC Data Manager processes the personal information collected by this Website, in line with the Italian Legislative Decree 196/2003 as amended by the Legislative Decree 101/2018 (hereinafter the "Privacy Code") and the EU Regulation N. 2016/679 (hereinafter "GDPR").
In full observance of the abovementioned regulations, the processing is based on principles of correctness, lawfulness and transparency and guarantees the privacy and security of the personal information of each User of this website, in accordance with the provisions of this Privacy Policy Notice.
This Notice is intended as information pursuant to articles 13 and 14 of the GDPR, and it applies exclusively to the collection of personal information through this website www.iahcrc.net.

1.2 Collected Data

This website collects data from its Users in two ways.

Data collected automatically

During the navigation in the website, the following information may be collected automatically (via cookies and other informatics technology, see Chapter 1.6) and stored in the log files of the website:

  • Internet protocol address (IP);
  • Browser type;
  • Parameters of the device used to connect to the site;
  • Name of the internet service provider (ISP);

These data are used to analyze user trends statistically and to administer and guarantee the security of the website; they are fully anonymous, in no way attributable to the identity of the Users.

Data provided voluntarily

This website can collect personal data from the users that freely and voluntarily provide them through its Contact Page, for the finalities described in the next Chapter.

1.3 Finalities and Legitimate Interest

The personal data collected and processed are the name and the email address of the Users presenting a request through the Contact Page of this Website.
The requests are considered pertinent if regarding (1) the activities of the IAHCRC Consortium and of the international community on the ATP1A3-related diseases in general, or (2) the exercise of the rights to personal data as described in Chapter 1.8. The requests are presented in terms of subject and description text.
The processing of these collected data is necessary for the purpose of the legitimate interest of the IAHCRC Consortium to handle the requests about its activities presented by the Users of this website. No other use is done of the data collected through this Website (no profiling, no score or evaluation, nor any other types of use that the GDPR – Art. 35(3) deems as “likely to result in a high risk to the rights and freedoms of natural persons”).

1.4 Modalities of the Processing

Only the requests with a pertinent subject are processed; all the other requests, not pertinent to the finalities and content of this website, and the associated personal data, are immediately deleted.
Personal data associated to pertinent requests are retained and processed using electronic, computerized and telematics tools with logics strictly related to the aforementioned finalities exclusively by the IAHCRC Data Manager.
Data are stored in electronic media in compliance with the minimum security measures required by law, both technical and organizational, adequate to guarantee the confidentiality and security of personal data, adopting security measures to prevent alteration or unauthorized loss, treatment or access and to guarantee the data integrity and security.
Based on the principle of minimization, the data collected and processed by the IAHCRC Data Manager are adequate, relevant and limited to what is necessary based on the finalities for which they are collected and in any case respecting the will of the Users (Data Subjects) that voluntary provide them through the Contact Page of this website.
The personal information that Users provide voluntarily associated to their requests, are processed exclusively to handle their requests and are erased when the requests are completed.

1.5 Transfer of the Data

The personal data collected through this website are processed exclusively by the IAHCRC Data Manager and are not transferred to any other external third parties, unless it is a legitimate request by the judicial authority and only in the cases provided for by law.

1.6 Cookies

The website uses cookies and similar technologies. Cookies allow to collect information about the access preferences of the Users, to verify the correct functioning of the Website and improve its functionality by customizing the content of the web pages based on the type of browser, to simplify navigation by automating the procedures.

The website uses the following categories of cookies:

Technical cookies
The cookies of this category include both persistent cookies and session cookies, which make it possible to distinguish between connected users and prevent a service from being delivered to the wrong user; they are also used for the security of the website and of the Users themselves. Without these cookies, the website or parts of it may not work properly. Consent for the use of this cookies is not required, as they are intrinsic to the access of the Users to the website.

Analytical cookies
Cookies in this category are used to collect information anonymously and aggregately on the correct use of the website and on the number and modalities of the User accesses for the purpose of statistical analysis, to improve the access to the website and simplify its use.

Third-party cookies
The site also acts as an intermediary for third-party cookies, exclusively used to provide the additional services of accessing some embedded multi-media data (YouTube, ...) and for sharing on the main social networks (Facebook, Twitter, ...). Some of these cookies may be profiling cookies, that are used by third parties to collect information on user behaviour and interests in order to provide personalized advertising.

Consent for the use of cookies
At the first visit of this website, Users are required to express their consent to the use of cookies and similar technologies, and in particular to the registration of such cookies on their local device for the above indicated purposes.

Refusal or withdrawal of consent to cookies
The Users can refuse the use of cookies and at any time can revoke an already given consent. As the cookies are connected to the browser used to access this Website, THEY CAN BE DISABLED DIRECTLY FROM THE BROWSER, thus refusing / revoking the consent to their use.
DISABLING COOKIES MAY PREVENT THE CORRECT USE OF SOME FUNCTIONS OF THE WEBSITE, in particular the services provided by third parties (YouTube, …) may not be accessible, and the embedded videos and images may therefore not be viewable.

1.7 Automated decision making

Neither the IAHCRC Consortium nor the appointed Data Manager use the personal data collected through this website for automated decision making.

1.8 Rights to Personal Data

All Users navigating through this website and presenting their requests through the Contact Page, even those located outside the EU countries, are entitled to exercise all of the following rights as stated in the Italian Privacy Code (Art. 7 D.Lgs. 196/2003) and in the EU GDPR (Art. 15 EU Regulation N. 679/2016):

  1. require (i) information as to whether your personal data is retained and (ii) access to and/or duplicates of your personal data retained, including the purposes of the processing, the categories of personal data concerned, and the data recipients as well as potential retention period;
  2. request rectification, removal or restriction of your personal data, e.g. because (i) it is incomplete or inaccurate, (ii) it is no longer needed for the purposes for which it was collected, or (iii) the consent on which the processing was based has been withdrawn;
  3. refuse to provide and - without impact to data processing activities that have taken place before such withdrawal -- withdraw your consent to processing of your personal data at any time;
  4. object, on grounds relating to your particular situation, that your personal data shall be subject to a processing. In this case, please provide IEMEST with information about your particular situation. After the assessment of the facts presented by you, IEMEST will either stop processing your personal data or present you our compelling legitimate grounds for an ongoing processing;
  5. take legal actions in relation to any potential breach of your rights regarding the processing of your personal data, as well as to lodge complaints before the competent data protection regulators;
  6. require (i) to receive the personal data concerning you, which you have provided to IEMEST, in a structured, commonly used and machine-readable format and (ii) to transmit those data to another controller without hindrance from IEMEST; where technically feasible you shall have the right to have the personal data transmitted directly from IEMEST to another controller; and/or
  7. not to be subject to any automated decision making, including profiling (automatic decisions based on data processing by automatic means, for the purpose of assessing several personal aspects) which produce legal effects on you or affects you with similar significance.

Users may (i) exercise the rights referred to above or (ii) pose any questions or (iii) make any complaints regarding their data processing in the IAHCRC-CLOUD Platform by contacting IEMEST using the contact details set out in the next Chapter.
Users located in the EU have the right to make a complaint to the data protection authority of their country of residence, if they believe that IEMEST has not been able to assist with their complaint or concern.

1.9 Contact Info

The Data Controller for this website is the IAHCRC Data Manager, appointed by the Scientific Coordinators of the IAHCRC Consortium to manage it and the data collected through it on an individual, voluntary basis.
The IAHCRC Data Manager, currently in the person of Dr. Maria Rosaria Vavassori, is also the only responsible of the processing of the personal data collected through this website.
She can be contacted at any time through the Contact Page of this website, to exercise the rights as listed in the previous Chapter and for any other request about the IAHCRC Consortium.

1.10 Changes to the Policy and Terms of Use

The Scientific Coordinators of the IAHCRC Consortium, in agreement with the IAHCRC Data Manager, may update this Notice about the Privacy Policy from time to time.
The most current version of the Notice will always be posted on this Website and will govern the collection and processing of the personal information of the users of this website.
This Version V1.2 of the Notice about the Privacy Policy of the IAHCRC Website is the most current and has been updated on June 17th 2019.

Publications - IAHCRC Researchers

RESEARCH PUBLICATIONS AND PRESENTATIONS FROM THE RESEARCHERS OF THE IAHCRC CONSORTIUM


1.

Mutations du gène ATP1A3 et pathologies neurologiques
Lesca G. et al.

March 2016 - read the poster presentation
   
2.

Spontaneously Fluctuating Motor Cortex Excitability in Alternating Hemiplegia of Childhood: A Transcranial Magnetic Stimulation Study
Stern WM, Desikan M, Hoad D, Jaffer F, Strigaro G, Sander JW, Rothwell JC, Sisodiya SM.

PLoS One. 2016 Mar 21;11(3):e0151667. doi: 10.1371/journal.pone.0151667. eCollection 2016.
read the article
   
3.

Effects of Vagal Nerve Stimulation in Alternating Hemiplegia of Childhood
Helseth A, Prange L, Kansagra S, Muh C and Mikati M

Neurology April 5, 2016 vol. 86 no. 16 Supplement I15.001.
read the article
   
4.

Motor function domains in alternating hemiplegia of childhood.
Masoud M, Gordon K, Hall A, Jasien J, Lardinois K, Uchitel J, Mclean M, Prange L, Wuchich J, Mikati MA

Dev Med Child Neurol. 2017 Aug;59(8):822-828.
read the article
   
5.

Diagnosis and Treatment of Alternating Hemiplegia of Childhood
Masoud M, Prange L, Wuchich J, Hunanyan A, Mikati MA

Curr Treat Options Neurol. 2017 Feb;19(2):8.
read the article
   
6.

Clinical profile of AHC-patients with ATP1A3 mutations in an International Cohort
Panagiotakaki E.  et al.

Presentation given at the 6th Symposium on ATP1A3 in Disease (Tokyo, 21 - 22 September 2017)
read the presentation
   
7.

The epileptology of alternating hemiplegia of childhood
Uchitel J, Helseth A, Prange L, McLean M, Ghusayni R, Sachdev M, Hunanyan A, Mikati MA

Neurology. 2019 Sep 24;93(13):e1248-e125
read the article

 

 

Publications - All Researchers

ORIGINAL RESEARCH PUBLICATIONS ON ALTERNATING HEMIPLEGIA OF CHILDHOOD


1.

SUMMARY OF ORIGINAL ARTICLES ON ALTERNATING HEMIPLEGIA OF CHILDHOOD
JANUARY - APRIL 2015

Written by M. Mikati - read
   
2.

SUMMARY OF ORIGINAL ARTICLES ON ALTERNATING HEMIPLEGIA OF CHILDHOOD
MAY - AUGUST 2015

Written by M. Mikati - read
   
3.

SUMMARY OF ORIGINAL ARTICLES ON ALTERNATING HEMIPLEGIA OF CHILDHOOD
SEPTEMBER - DECEMBER 2015

Written by M. Mikati - read
   

 

 

Partners

SUPPORTING PARTNERS

The supporting partners are all the non-scientific organizations willing to actively contribute to the activities of the Consortium.
They can be of three types:

  • Funders, funding either the current expenses (website, teleconference services, travels, …) or a specific study carried out by the Consortium
  • Logistical Supporters, in particular the patient associations, and patient-driven networks, supporting the IAHCRC in its efforts: to further develop the Node databases; to develop research projects to be submitted for funding to national and international institutions; to organize scientific and educational meetings or diffuse the results of the IAHCRC members to the scientific and medical community ...
  • Staff, appointed by the Consortium for specific tasks: technical support and data management, project coordination and management, administrative secretariat ...

 

FUNDERS

The Scientific Coordinators and all the IAHCRC members heartily thank the organizations that funded the activities and studies of the Consortium in these three years from its official creation.

  • "La Falegnameria" di Vavassori Alessandro, Bergamo, ITALY - Internet Services
  • Cure AHC - American Patient Association for AHC, Raleigh, NC, USA - IAHCRC-CLOUD Platform Project and OBSERV-AHC Study
  • AFHA - French Patient Association for AHC, St Germain lès Arpajon, FR - OBSERV-AHC Study
  • AHC Association of Iceland, Reykjavík, IS -  IAHCRC-CLOUD Platform Project
  • AHCUK - AHC Support Group, UK - IAHCRC-CLOUD Platform Project
  • AHC Vereniging Nederland - Dutch Patient Association for AHC, The Netherland - IAHCRC-CLOUD Platform Project
  • AESHA - Spanish Patient Association for AHC, Barcelona, ES - OBSERV-AHC Study

 

More Articles ...

IAHCRC - International Consortium for the Research on Alternating Hemiplegia of Childhood and other ATP1A3 related diseases