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 Minimal nr. of patients to include
CALM – registry Peter Schwartz / Lia Crotti (Instituto Auxologico Italiano IRCCS, Milan, Italy) Carla Spazzolini

(c.spazzolini@auxologico.it)

https://redcap.heart-institute.nl

Hosting in AMC, Amsterdam

1
CPVT – registry Arthur Wilde (AMC, Amsterdam) Krystien Lieve (k.v.lieve@amc.nl) https://www.openclinica.nl

Hosting in AMC, Amsterdam

10
Short QT – registry Silvia Priori / Andrea Mazzanti (Instituti Clinici Scientifici Maugeri, Pavia, Italy) Maira Marino

(maira.marino@icsmaugeri.it)

https://redcap.heart-institute.nl

Hosting in AMC, Amsterdam

1
PRKAG2 – registry Philippe Charron

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

Gabriel Laurent

(gabriel.laurent@chu-dijon.fr)

https://redcap.heart-institute.nl

Hosting in AMC, Amsterdam

Status: under development,

estimated delivery date: 15/07/2018

1
LQT5 (KCNE1)-registry Jason Roberts

(University Hospital London, Ontario, Canada)

Jason Roberts

(jason.roberts@lhsc.on.ca)

https://redcap.lawsonresearch.ca

Hosting in Canada

1
ARVC / PLN – registry Peter van Tintelen

(AMC, Amsterdam, The Netherlands

Peter van Tintelen

(p.vantintelen@amc.nl) /

Nynke Hofman

(n.hofman@amc.nl)

 

https://redcap.heart-institute.nl

Hosting in AMC, Amsterdam

5

 

LQTS (GWAS)-registry Connie Bezzina

(AMC, Amsterdam, The Netherlands)

 

Najim Lahrouchi

(n.lahrouchi@amc.nl)

https://redcap.heart-institute.nl

Hosting in AMC, Amsterdam

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

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