PATIENT REGISTRIES


MEDICAL SOCIETIES AND RESEARCHERS COLLABORATING WITH THE SPANISH 

NATIONAL RARE DISEASES REGISTRY AND THE SpainRDR NETWORK: 

INCORPORATION OF PATIENT REGISTRIES ​

 

Patient registries are epidemiological tools based on observational methods, which collect data about onset and development of diseases. Their aim is to promote etiological and clinical research and, at the same time, to contribute health services planning for the patients care and their families support.

 

It is essential to establish procedures and requirements to include patient registries, devoted to one rare disease or a group of them, in the National Rare Diseases Registry that belongs to the Institute of Rare Diseases Research (IIER), Instituto de Salud Carlos III (ISCIII).

 

This collaboration respects registry identity and management autonomy. Spanish national Rare Diseases Registry and SpainRDR network facilitates the required criteria and rules to clinicians, researchers or networks interested in this collaboration. 




ISCIII establishes collaboration and institutional agreements with each collaborating medical society or research group. Besides, ethical norms as well as personal and group commitments for all participants are stated in the consortium agreement.

 

Patient registries being part of National Rare Diseases Registry should take into account and respect the minimum dataset which is already part of this platform data model. Apart from common data elements for all included patient registries, it is possible to add any disease-specific variable in each patient registry. Likewise the information to be collected should be agreed and standardized, so that every member of the group registers the data in the same way.

 

National Rare Diseases Registry has available an informed consent already approved by IIER ethical committee. This document should be the reference for all patient registries joining the National Registry. If necessary additional considerations could be added to this informed consent, depending on disease characteristics or professional’s working institution. National Rare Diseases Registry is stated in the Spanish Data Protection Agency therefore patient registries included in National Registry do not require additional statement.





COLLABORATING MEDICAL SOCIETIES / ORGANIZATIONS

Acrónimo

Spanish Society of Pneumology and Thoracic Surgery

SEPAR

Spanish Society of Allergy and Clinical Immunology

SEAIC

Hospital Clínic de Barcelona - European Reference Network for Rare and Congenital Anemias

HCB

Spanish Society of Neurology

SEN

Spanish Society of Family and Community Medicine

SemFYC

Spanish Association of Human Genetic

AEGH

Spanish Association of Biotechnology Companies 

ASEBIO

Spanish Society of Pediatric Pneumology

SENP

Spanish Society of Pediatric Endocrinology 

SEEP

Spanish Association of Orphan and Ultra-orphan Drugs Laboratories

AELMHU

Head of Regenerative Medicine Unit, CIEMAT

CIEMAT

Spanish Confederation of Organizations for people with intellectual disability

FEAPS

Spanish Association for Research and Support of the Wolfran Syndrome

AEIASW

Spanish Rare Cancer Network

REDECAN