Information for Patients

 

 

Go to the APP PETER MANUAL

 

 

General Info

 

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.


TransplantChild is the ERN on paediatric transplantation. It encompasses both solid organ transplantation (SOT), included multiorgan and complex procedures, and hematopoietic stem cells transplantation (HSCT). The main goal is to have a significant impact on children’s quality of life in the long term. To achieve it, the methods implemented are: giving the patients network access to diagnostic advice and joining with members of the network and stakeholders to increase the information, innovate and expertise in the transplant procedures. 

 

TransplantChild involves 26 hospitals (17 full member and 9 affiliated partners) from 19 countries.   


The Network members are committed to collaborating closely in order to improve the health outcomes of their patients. Clinical registries are indispensable instruments to provide demographic and natural history information. More than 30 registries on transplantation are currently active across Europe, most of which are limited to regional or national patient coverage and are focused on a single type of transplant (kidney, liver, SOT, etc.). While the existing registries are collecting important information, none of them is focused on all type of paediatric transplantation and is currently used in all TransplanChild centers. 

 

Paediatric Transplantation European Registry (PETER) is a new rational, efficient, interoperable, open, accessible paediatric transplant registry for all type of paediatric transplantation. PETER will allow generating real world evidence monitoring by the identification of common outcomes for all types of transplant. This registry can be used as a model to support care and research for the benefit of patients, improvement of the transplanted patient healthcare, their life expectancy and long-term quality of life of children and their families. 

 

PETER is aimed to describe the health status of patients transplanted in pediatric age. Specific aims are to: 1. measure quality of life (global and associated with pediatric transplantation); 2. monitor the progression of the disease and its response to treatment; 3. correlate the changes during the transplantation process with the patient’s quality of life; 4. assess the need focused on the patients; 5. propose changes in the management of patients, according to the needs detected. 

 

PETER leans on an interoperable technology platform with a module of business intelligence that will allow it to be a predictive registry directly impacting on the process of patient care, improving the process personalised clinical decision-making in the healthcare systems. 

 

Access to PETER is strictly regulated to protect the data privacy rights of the patients. Only authenticated users can request access to use PETER. Access of authorized users to the registry is controlled by assignment of a secure, individualized password. PETER has member Healthcare Provider centres (HCP) and it is envisaged that the users of PETER are Health Professionals (HP) within these Healthcare Provider centres (HCPs). The data entered will only be visible to the investigators of the Center and will not be shared with other users of the registry, except in aggregated format for benchmarking purposes. Patients must give their consent for data use in ERN registries and databases. 

 

PETER includes solid organ and/or hematopoietic stem cells transplant recipients <18 years of age followed up at the hospital that registers them. Data are collected from pre-transplant time (waiting list) to long-term post-transplant follow up. Collected data include clinical data (patient’s status, graft’s status, complications) as well as patients reported outcome measures, in order to document long-term needs of patients, the impact of the transplants and transition from childhood to adulthood, both from the medical, social, familial, quality of life perspectives. 

 

 


 

Privacy Policy

 

Who we are
Our website address is: https://www.transplantchild.eu. The official web site of European reference network on paediatric transplantation (ERN-TransplantChild), part of 3rd Health programmee of European Commission. The responsable for Data is FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ Paseo de la Castellana 261, 28046 de Madrid G83727057 protecciondedatos@idipaz.es 917277576 and data processing responsible: Alaro Avant, S.L. Avda. de Brasil 17, 7G, 28020, Madrid dpo.fiblapaz@alaroavant.com 911123962.
What personal data we collect and why we collect it
Comments
When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.
Media
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
Contact forms
Cookies
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.
If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.
When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.
If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
Embedded content from other websites
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.
These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.
Newsletter
Management of the subscriptions to the Newsletter, as well as the sending of communications related to the subscription.
Who we share your data with
How long we retain your data
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.
For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
Our data will be kept as long as you do not disagree with the treatment of them for these purposes.
What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
·         Anyone has the right to obtain confirmation whether or not FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ is treating personal data that concerns them.
·         The interested persons have the right to access their personal data, as well as to request the rectification of inaccurate data or, where appropriate, request its deletion when, among other reasons, the data is no longer necessary for the purposes that were collected.
·         In some circumstances, interested parties may request the limitation of the data processing, in this case we will only keep them for claims requests.
Where we send your data
Visitor comments may be checked through an automated spam detection service.
Your contact information
FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ
Paseo de la Castellana 261, 28046 de Madrid
G83727057
protecciondedatos@idipaz.es
917277576
Additional information
Your data will not be communicated to any third party except by legal obligation.
·         We inform you that your data will be provided to service providers located outside the European Economic Area attached to the EU-US Privacy Shield agreement, specifically to the entity Mailchimp, operated by The Rocket Science Group LLC, a company headquartered in the State of Georgia in the United States, in charge of the newsletter delivery services for FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ.
Available information: https://www.privacyshield.gov/participant?id=a2zt0000000TOWQAA4   
· In some circumstances and for reasons related to particular situation, the interested parties may withdraw the consent given or oppose the data processing. FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ will stop data processing, except for compelling legitimate reasons, or the exercise or defense of possible claims.
· Interested persons may request the data portability, in this case they will be sent to the interested party or, if so indicated, to another data controller, a structured format, commonly used and mechanically read.
· Those interested have the right to complain before the Spanish Agency for Data Protection (AEPD). How can you exercise your rights of access, rectification, deletion and portability of your data, and the limitation, withdrawal of consent or opposition to your treatment? · Interested parties can exercise these rights by addressing to FUNDACIÓN PARA LA INVESTIGACIÓN BIOMÉDICA DEL HOSPITAL UNIVERSITARIO LA PAZ through the postal or electronic address indicated in the first section (Responsible).
· The interested party wishing to exercise their rights must present their ID or other document proving their identity.

This site uses cookies: Detail information.  Ok, Thanks!