Data Access Committee

The DAC consists of the project staff at the Office for Rare Conditions Registries in Glasgow and external members who serve on the Committee for 3 years (plus 1 optional).  All members other than those marked with an asterisk are active users of the Registry as reporting centres or investigators. If you are interested in becoming a member of the Committee, please get in touch. To find out more please see the DAC remit.

MemberRoleAffiliationTenure
Start		Tenure
End
Aristides ManiatisChairCentennial, USA20252030
Gudmundur JohannssonSteering Committee ChairGothenburg, Sweden20262030
Faisal AhmedProject LeadGlasgow, UKN/AN/A
Abdulmoein Al-AghaOrdinary MemberJeddah, Saudi Arabia20242027
Malika AlimussinaORC Registries ScientistGlasgow, UKN/AN/A
Lissette CéspedesIndustry RepresentativePfizer2025N/A
Ching ChenOrdinary MemberGlasgow, UK20232026
Ashley Gilmer*Patient RepresentativeICOSEP, USA20252028
Chunxiu GongOrdinary MemberBeijing, China20242027
Nicola Greenlaw*Ethics AdvisorGlasgow, UK2024N/A
Michael HøjbyIndustry RepresentativeNovo Nordisk2026N/A
Primož KotnikOrdinary MemberLjubljana, Slovenia20242027
Annie LeongOrdinary MemberKuala Lumpur, Malaysia20242027
Diana Vitali*Patient RepresentativeSOD, Italy20242027
Malgorzata WasniewskaOrdinary MemberMessina, Italy20242027

Supported by Project Management Group

Declarations of Interests Table

Members of the Data Access Committee can access a private area here

Last Modified