Start Collaborating
Start Collaborating
Start Collaborating
Why?
By collaborating with HICC, you become part of a global effort to gather de-identified clinical and genetic data from HoFH patients. Our current understanding of this rare disorder is limited, often leading to medical management based heavily on expert opinions. Together, we can change that.
HICC brings together physicians and scientists from around the world to establish a comprehensive network. Through this collaboration, we aim to:
Illuminate the prevalence, clinical consequences, and treatments of HoFH.
Bridge the gap between research and real-world practice.
Your participation is crucial in redefining the understanding and care of HoFH, making a significant impact on the lives of patients worldwide. Join us in our quest to make a difference.
Together, we can transform the landscape of HoFH research and treatment.
Why?
By collaborating with HICC, you become part of a global effort to gather de-identified clinical and genetic data from HoFH patients. Our current understanding of this rare disorder is limited, often leading to medical management based heavily on expert opinions. Together, we can change that.
HICC brings together physicians and scientists from around the world to establish a comprehensive network. Through this collaboration, we aim to:
Illuminate the prevalence, clinical consequences, and treatments of HoFH.
Bridge the gap between research and real-world practice.
Your participation is crucial in redefining the understanding and care of HoFH, making a significant impact on the lives of patients worldwide. Join us in our quest to make a difference.
Together, we can transform the landscape of HoFH research and treatment.
Why?
By collaborating with HICC, you become part of a global effort to gather de-identified clinical and genetic data from HoFH patients. Our current understanding of this rare disorder is limited, often leading to medical management based heavily on expert opinions. Together, we can change that.
HICC brings together physicians and scientists from around the world to establish a comprehensive network. Through this collaboration, we aim to:
Illuminate the prevalence, clinical consequences, and treatments of HoFH.
Bridge the gap between research and real-world practice.
Your participation is crucial in redefining the understanding and care of HoFH, making a significant impact on the lives of patients worldwide. Join us in our quest to make a difference.
Together, we can transform the landscape of HoFH research and treatment.
Process of collaboration
The consortium is open and welcomes new colleagues who are involved in the care for patient with HoFH to join!
Joining the HICC registry would be relatively straightforward; any collaborator who shares data of HoFH patients under his/her care will be a member of our consortium. Ownership of the data will remain with the contributor, so he/she will be asked permission and be acknowledged on all formal publications that result from the collaborative effort. Before data can be shared, the collaborator is responsible for meeting local regulatory requirements from the IRB or ethics committee.
Process of collaboration
The consortium is open and welcomes new colleagues who are involved in the care for patient with HoFH to join!
Joining the HICC registry would be relatively straightforward; any collaborator who shares data of HoFH patients under his/her care will be a member of our consortium. Ownership of the data will remain with the contributor, so he/she will be asked permission and be acknowledged on all formal publications that result from the collaborative effort. Before data can be shared, the collaborator is responsible for meeting local regulatory requirements from the IRB or ethics committee.
Process of collaboration
The consortium is open and welcomes new colleagues who are involved in the care for patient with HoFH to join!
Joining the HICC registry would be relatively straightforward; any collaborator who shares data of HoFH patients under his/her care will be a member of our consortium. Ownership of the data will remain with the contributor, so he/she will be asked permission and be acknowledged on all formal publications that result from the collaborative effort. Before data can be shared, the collaborator is responsible for meeting local regulatory requirements from the IRB or ethics committee.
HICC Collaboration and Research Guidelines
Engage in Data Analysis and Research Initiatives
As a member of HICC, you are invited to perform analyses on our extensive dataset and propose ideas to expand it. Any member can participate in these studies, meeting the ICMJE guidelines for authorship.
Authorship and Attribution
For publications, the default setting is to list studies under the title “The HICC Consortium.” In the appendix or acknowledgments, contributors will be named specifically, followed by Steering Committee members and all members who provided the data for the analyses, including country coordinators and physicians.
Submitting Research Proposals
Every member is encouraged to submit ideas for additional analyses. Proposals should include:
Rationale
Analysis plan
Expected outcomes
Timelines
Statement of adherence to Good Clinical Practice (GCP) in data handling
Proposals will be shared on the HICC email list and discussed at a biannual all-members meeting organized by the coordinator. Submitters will lead the projects and form a writing group in collaboration with the Steering Committee.
Handling Similar Proposals
If multiple groups submit similar research ideas, decisions on roles and collaborations will be made by consensus at the HICC collaborators meeting, with an aim to merge the groups when appropriate.
The HICC Consortium - Working Group for Papers
This group includes all active participants in a specific paper who meet the following criteria:
Contributed substantially to the conception or design of the work, or to the acquisition, analysis, or interpretation of data.
Drafted or critically reviewed the work for important intellectual content.
Gave final approval and took responsibility for the work, completing all necessary forms.
The standard convention for listing authors will be followed, with primary contributors as first authors and senior contributors as senior authors. The Steering Committee will make final decisions on authorship if there are any doubts.
HICC Collaboration and Research Guidelines
Engage in Data Analysis and Research Initiatives
As a member of HICC, you are invited to perform analyses on our extensive dataset and propose ideas to expand it. Any member can participate in these studies, meeting the ICMJE guidelines for authorship.
Authorship and Attribution
For publications, the default setting is to list studies under the title “The HICC Consortium.” In the appendix or acknowledgments, contributors will be named specifically, followed by Steering Committee members and all members who provided the data for the analyses, including country coordinators and physicians.
Submitting Research Proposals
Every member is encouraged to submit ideas for additional analyses. Proposals should include:
Rationale
Analysis plan
Expected outcomes
Timelines
Statement of adherence to Good Clinical Practice (GCP) in data handling
Proposals will be shared on the HICC email list and discussed at a biannual all-members meeting organized by the coordinator. Submitters will lead the projects and form a writing group in collaboration with the Steering Committee.
Handling Similar Proposals
If multiple groups submit similar research ideas, decisions on roles and collaborations will be made by consensus at the HICC collaborators meeting, with an aim to merge the groups when appropriate.
The HICC Consortium - Working Group for Papers
This group includes all active participants in a specific paper who meet the following criteria:
Contributed substantially to the conception or design of the work, or to the acquisition, analysis, or interpretation of data.
Drafted or critically reviewed the work for important intellectual content.
Gave final approval and took responsibility for the work, completing all necessary forms.
The standard convention for listing authors will be followed, with primary contributors as first authors and senior contributors as senior authors. The Steering Committee will make final decisions on authorship if there are any doubts.
HICC Collaboration and Research Guidelines
Engage in Data Analysis and Research Initiatives
As a member of HICC, you are invited to perform analyses on our extensive dataset and propose ideas to expand it. Any member can participate in these studies, meeting the ICMJE guidelines for authorship.
Authorship and Attribution
For publications, the default setting is to list studies under the title “The HICC Consortium.” In the appendix or acknowledgments, contributors will be named specifically, followed by Steering Committee members and all members who provided the data for the analyses, including country coordinators and physicians.
Submitting Research Proposals
Every member is encouraged to submit ideas for additional analyses. Proposals should include:
Rationale
Analysis plan
Expected outcomes
Timelines
Statement of adherence to Good Clinical Practice (GCP) in data handling
Proposals will be shared on the HICC email list and discussed at a biannual all-members meeting organized by the coordinator. Submitters will lead the projects and form a writing group in collaboration with the Steering Committee.
Handling Similar Proposals
If multiple groups submit similar research ideas, decisions on roles and collaborations will be made by consensus at the HICC collaborators meeting, with an aim to merge the groups when appropriate.
The HICC Consortium - Working Group for Papers
This group includes all active participants in a specific paper who meet the following criteria:
Contributed substantially to the conception or design of the work, or to the acquisition, analysis, or interpretation of data.
Drafted or critically reviewed the work for important intellectual content.
Gave final approval and took responsibility for the work, completing all necessary forms.
The standard convention for listing authors will be followed, with primary contributors as first authors and senior contributors as senior authors. The Steering Committee will make final decisions on authorship if there are any doubts.
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