Last update 03 May 2022
The Multiple Sclerosis Data Alliance (“MSDA”) is a global multi-stakeholder non-profit collaboration that strives
overcome the sociological and technical challenges that arise when scaling-up real-world MS data. The MSDA is
acting and operating via the European Charcot Foundation (“ECF”), an independent non-profit organization,
organized and existing under the laws of Belgium, having its registered office located at Vaartdijk 3, bus 2,
Leuven, Belgium and with company number (RLE Leuven) 0547.995.164.
Finding real-world MS data sources that have the potential to address urgent needs within the ecosystem is
challenging and time-consuming. To overcome this challenge, the MSDA strives towards developing and
implementing tools to reduce the time needed to find and assess real-world MS data sources and data acquisition
systems. Since 2019, the MSDA has developed and maintained a metadata catalogue (“MSDA Catalogue”). The
MSDA Catalogue allows metadata providers (“Metadata Providers”) to make available metadata profiles
(“Metadata”) that can be browsed, filtered, ordered and exported by end-users, including but not limited to
Metadata Providers (“Users”).
BY REGISTERING AND USING THE MSDA CATALOGUE, THE USER ACKNOWLEDGES THAT HE/SHE HAS
READ THESE TERMS CAREFULLY AND THAT HE/SHE IS LEGALLY COMPETENT TO AGREE WITH THESE
TERMS WITHOUT RESERVATION.
1. Description of the MSDA Catalogue
The MSDA Catalogue is made available through a platform accessible via the following url:
The MSDA shall use its best endeavours to provide the User access to and use of the MSDA Catalogue (“Access
and Use”) in accordance with the standards that may be expected from a similar service provider delivering
similar services. Access and Use shall include, but is not limited to, the right to browse, compare, filter,
and/or export the Metadata, and/or, for Metadata Providers only, certain editing rights on their own Metadata.
The MSDA Catalogue is provided to the Users “AS IS”.
The Users accept and acknowledge that the MSDA Catalogue is dependent on software, which means that
flawless operation and permanent availability cannot be assured.
Access and Use is granted after registration and are free of charge. Access and Use is granted and allowed for
the purpose to acquire and browse the Metadata on multiple sclerosis real-world data sources and acquisition
Any responsibility and/or liability of the MSDA outside the Scope shall be excluded.
During the registration process, Users will be asked to accept these Terms, which is a mandatory requirement
before Access and Use shall be granted.
After the registration process, the User can Access and Use the MSDA Catalogue for its intended purposes via
his/her personal account (“Account”).
The MSDA reserves the right to change the functionalities and availability of the MSDA Catalogue at all times and
at its own discretion. Insofar as reasonably possible, any major expected change in availability of the MSDA
Catalogue shall be communicated in advance via the MSDA Website (www.msdataalliance.com; hereinafter:
The MSDA Catalogue is not intended and shall not be construed as a medical device and/or as generating
personalized medical advice in terms of the applicable legislation and/or regulations, including EU or national
legislations and/or regulations.
2. Description of the MSDA Services
The MSDA shall use its best endeavours to provide the following support and maintenance services in relation to
the MSDA Catalogue (“MSDA Services”): (i) Maintenance (as defined hereinafter); and (ii) Support (as defined
For the purpose of these Terms, “Maintenance” shall mean: corrective maintenance only, with the exclusion of
evolutive maintenance. Hence, maintenance does not include software updates nor new features, but is aimed at
providing uninterrupted service delivery on a best-efforts basis only for the duration of the Access and Use.
For the purpose of these Terms “Support” shall mean: assistance for resolving any software issues (such as
bugs) or other types of malfunctions or defects, but shall not include personalized training on how to use the
MSDA Catalogue. Support will be offered via email (email@example.com) and documentation on the MSDA
website only. Requests via email will be handled during normal business hours (from 9 AM to 5 PM) on a
best-efforts basis only, without any warranty or representation with regard to specific response or resolution
If a User requires more customized services, he/she should contact the MSDA (firstname.lastname@example.org).
3. Terms Specific for Metadata Providers
The Metadata Provider represents and warrants to the MSDA that the Metadata are (i) correct; (ii) shall only
consist of or contain metadata; (iii) shall in no event consist or contain patient-level data; (iv) may be
the MSDA Catalogue; and (v) be made available to other Users without any restriction and/or without infringing
any third-party rights.
The Metadata Provider remains at all times holder of all rights (including but not limited to Intellectual
Rights (as defined hereinafter)) related to his/her Metadata. This includes the Metadata Provider’s right to
modify and/or delete his/her Metadata at any time.
Without prejudice to any contradicting requirements under applicable data protection or professional secrecy
laws, the Metadata Provider hereby grants the MSDA an exclusive, worldwide, irrevocable, sublicensable,
royalty-free and everlasting right to use its/her Metadata, insofar the MSDA makes use of this content in the
framework of delivering or improving the MSDA Catalogue, MSDA Services and/or MSDA Website or for
promotional, academic or educational purposes. If and where applicable, any such use shall properly
acknowledge the Metadata Provider concerned to the extent reasonably possible. Such use shall include the right
to reproduce, to communicate to the public, to distribute, rent, adapt or translate.
The Metadata Provider agrees that the MSDA may, at all times and its sole discretion, transfer his/her Metadata
for technical reasons only (e.g. to ship the Metadata to another platform used by the MSDA for the MSDA
Catalogue), without the Metadata Provider’s prior consent or approval.
4. MSDA RIGHTS
The MSDA remains at all times holder of all rights (including but not limited to Intellectual Property Rights)
to the MSDA Catalogue, the MSDA Services, MSDA Website and/or any documentation (including but not limited
to all appurtenances) related hereto (“MSDA Rights”).
The MSDA does not transfer to the User, in any way as part of the Access and Use, any ownership or other rights
in and/or to the MSDA Rights. The User shall therefore not copy, analyse, decompile, make public, distribute,
transfer to third parties, or change any MSDA Rights beyond what is needed for normal use of the MSDA
Catalogue as per his/her Access and Use or unless expressly permitted by the MSDA in writing.
For the purpose of these Terms “Intellectual property Rights” shall mean: all brands, logos, trademarks, internet
domain names, models and designs, patents, copyrights (including all rights relating to software) and moral
rights relating to databases, semiconductor topographies, knowhow, and other rights, as well as all other
and intellectual rights, in any case independent from whether or not they have been registered and with the
inclusion of registration applications as well as all equivalent rights or means of protection leading to a
result anywhere in the world.
5. Communication and Publication
Any User’s publicly accessible materials, such as scientific publications or reports or webpages that contain
information directly derived from the MSDA Catalogue (including but not limited to Metadata) and/or MSDA
Website must properly acknowledge the MSDA
The Users may not reproduce the entire MSDA Catalogue and/or MSDA Website or portions thereof for any
communication or publication that serves to duplicate the purposes of the MSDA Catalogue and/or MSDA
6. Duration – Modifications – Termination
These Terms shall apply from the moment the User registers with the MSDA Catalogue, until his/her Account is
The MSDA reserves the right to modify these Terms without the Users’ prior consent. Such modifications shall be
communicated via the MSDA Website or via their newsletters and social media channels. If the User does not
accept the modifications, the User should stop using the MSDA Catalogue and/or the MSDA Services from the
moment the modified Terms apply. By continuing to use the MSDA Catalogue and/or MSDA Services after the
modifications to the Terms, the User indicated to accept these modifications without reservation
The User can request to delete his/her account by sending an email to email@example.com. The MSDA will
make sure the account is deleted within 5 (five) working days after receiving the request
Upon removal of the User’s Account, all personal details included in his/her Account shall be deleted or
by the MSDA, unless a legal or regulatory obligation or a judicial or administrative order prevents the MSDA to
7. Personal data processing
For the provision of the Services, the MSDA processes the User’s personal data as further stated in the Privacy Notice, the terms of which are herein incorporated by reference and is an integral part of these Terms. In the
event of any discrepancy or inconsistency between these Terms and the Privacy Notice, the latter shall prevail
The MSDA is not responsible and cannot be held liable for any shortcoming, not even when resulting from a
grave error, negligence or fraud in the services of third parties on which the MSDA Catalogue, MSDA Services
and/or MSDA Website rely/relies but which are beyond the MSDA’s control
The MSDA can only be held liable for proven damages caused by their grave error or fraud. In any case, for all
User’s claims and demands for damages, he/she is first to refer to the MSDA by sending an email to
firstname.lastname@example.org. The total, aggregate liability of the MSDA with regards to the provision of the MSDA
Catalogue, MSDA Services and/or MSDA Website shall in all circumstances be limited to 10.000 euro
In no event, the MSDA shall be liable for any indirect damage, which shall at least be understood as
consequential damages, financial or commercial damages, loss of profit or income, lost opportunities, lost
savings, damage due to business discontinuity, reputational damage and damage from legal proceedings initiated
by third parties against the User
Any notion starting with a capital shall be defined by explicit reference in these Terms. Where possible given
context, singular words shall be interpreted as also including the plural and vice versa. The language of the
and of all interactions between Users and the MSDA in relation to the MSDA Catalogue, MSDA Services and/or
MSDA Website shall be in English
These Terms supersede any other related requests, verbal or in writing, to submit an offer(s) concerning the
MSDA Catalogue, MSDA Services and/or MSDA Website as well as any specific terms and conditions of the User
(or those of any third party whom the User is affiliated with)
The MSDA is entitled to rely at its own discretion on subcontractors for the fulfilment of its obligations under
Terms. These Terms apply in favour of any subcontractor or third party on which the MSDA relies for the
of the MSDA Catalogue, MSDA Services and/or MSDA Website
Where reference is made to certain laws or regulations, such reference shall also include any change,
replacement or annulment of said laws or regulations, including any related executive decision. Whenever
possible, the provisions of these Terms shall be interpreted in such a manner as to be valid and enforceable
under the applicable law. However, if one or more provisions of these Terms are found to be invalid, illegal or
unenforceable, in whole or in part, the remainder of that provision and of these Terms shall remain in full
effect as if such invalid, illegal or unenforceable provision had never been contained herein. Moreover, in such
event, the MSDA shall amend the invalid, illegal or unenforceable provision(s) or any part thereof and/or agree
a new provision, in such a way as to reflect insofar as possible the purpose of the invalid, illegal or
Users are not allowed to transfer any of their rights and obligations under these Terms to a third party, unless
agrees in writing to such transfer
These Terms are governed by Belgian law. Users agree to try and solve any dispute regarding these Terms
through negotiations. Should negotiations fail, then all disputes concerning the validity, interpretation,
enforcement, performance and termination of these Terms shall be submitted to the jurisdiction of the courts of
Antwerp, Hasselt division
By checking the check boxes below, you give your specific and informed consent to the processing of your personal
data as stated in this Privacy Notice. You have the right at all times to revoke this consent to use your personal
data. In order to do so, please send an e-mail to email@example.com.