I-DSD/I-CAH Membership Fee Structure

I-DSD/I-CAH Membership Fee Structure

As the I-DSD/I-CAH Registries become independent of any single anchor funder, they are adopting a new membership structure with different levels of membership. This will help to sustain the registries. The membership process will be implemented over the coming months.

 

Registries for Rare Endocrine Conditions at the Office for Rare Conditions

I-DSD/I-CAH Membership Fee Structure:

Full Membership:
Standard annual fee full member - €100 (Low /Middle Income: €50)
Discounted annual fee full member for those who are known co-authors on full papers published within the last 3 years of membership using data from the registries: €50 (Low/Middle Income: €25)
Subscription period: 1 year –

The benefits for a full member would be:
- Discounted fee to the scientific meeting of any disease-specific registry network where the registry is supported by the Office.
- Eligibility for travel awards and presentation prizes at the scientific meeting of any disease-specific registry network where the registry is supported by the Office
- included in members’ directory
- receive newsletters and news alerts of all disease network; can refine preferences
- the right to vote on the composition of the executive committee of the disease-specific registry network
- the right to join the executive committee of disease specific registry network
- access to the members only section of all disease registries supported by the Office for Rare Conditions
- provision of clinical benchmark data for patient reported outcomes for member’s centre
- free advice for initial enquiry to any registry supported by the Office
- ability to nominate auxiliary members

Associate Membership:
Reduced annual fee for those who would like to search other users and centres but not data - €50 (Low/Middle Income: €25)

The benefits for an associate member would be:
- discounted fee to the scientific meeting of the disease-specific network
- eligibility for travel awards and presentation prizes at the scientific meeting of the disease-specific registry network
- included in member’s directory
- receive newsletters and news alerts
- access to the members only section of the website
- fee for submitting enquiry to any registry supported by the Office

Auxiliary Membership
This membership level applies for other users at a centre registered as a full member

- No membership fee
- Confirmation/support of local Centre required
- Discounted fee to the scientific meeting of the disease-specific network for up to 3 auxiliary members from each centre
- eligibility for travel awards and presentation prizes at the scientific meeting of the disease-specific registry network
- included in member’s directory
- receive newsletters and news alerts
- access to the members only section of the website.

Patient/parent:
No membership fee
Can only access their own data

12 December 2017