Disease Registries

ERN GUARD-Heart members have established patient registries for the following rare heart-diseases/disease-groups: ARVC, CPVT, CALM-genes, LQT5 (KCNE1-gene), LQTS, SQTS, and PRKAG2-gene.

How to participate?

For including patients in the registries: please check the minimal number of patients to include in the table and contact the specific study-coordinator by e-mail. He/ she will request for a log-in account.

Only the leaders and study-coordinators have access to the complete data of the registry. As a participant you will receive access to the patients of your own hospital/ institute.

Consent form

Consent of the patient is required. For new patients and families the new designed ERN-consent form should be used and stored at the local HCPs. This consent form is available at the IT-platform.

Questions?

For general questions about the existing registries, please contact Nynke Hofman (project/ research manager ERN GUARD-Heart): n.hofman@amc.nl.

Ideas for new registries should be discussed at the board meeting of ERN GUARD-Heart first.

Registry Led by Study coordinator Link / hosting Nr. of patients
CALM – registry Peter Schwartz / Lia Crotti

(Instituto Auxologico Italiano IRCCS, Milan, Italy)

Carla Spazzolini REDCap Heart Institute

Hosting in AMC, Amsterdam

1
CPVT – registry Arthur Wilde

(AMC, Amsterdam)

Krystien Lieve Open Clinica

Hosting in AMC, Amsterdam

10
Short QT – registry Silvia Priori / Andrea Mazzanti

(Instituti Clinici Scientifici Maugeri, Pavia, Italy)

Maira Marino REDCap Heart Institute

Hosting in AMC, Amsterdam

1
PRKAG2 – registry Philippe Charron

(AP-HP Pitié Salpêtrière Hospital, Paris, France)

Gabriel Laurent REDCap Heart Institute

Hosting in AMC, Amsterdam

 

1
LQT5 (KCNE1)-registry Jason Roberts

(University Hospital London, Ontario, Canada)

Jason Roberts REDCap Lawson Research

Hosting in Canada

1
ARVC / PLN – registry Peter van Tintelen

(AMC, Amsterdam, The Netherlands

Peter van Tintelen /

Nynke Hofman

 

REDCap Heart Institute

Hosting in AMC, Amsterdam

5

 

LQTS (GWAS)-registry Connie Bezzina

(AMC, Amsterdam, The Netherlands)

 

Najim Lahrouchi

REDCap Heart Institute

Hosting in AMC, Amsterdam

Status: under development, estimated delivery-date: 01/09/2018

 10

Legenda
Registry = name of the registry
Led by = name of the leader of the registry
Study coordinator = name and email address of contactperson
Link / Hosting = Place where registry is hosted and link to website
Nr. of patients = minimal number of patient to include