Archived Weekly Tips

in 2011 and 2012 Genetic Alliance Registry and BioBank created a weekly tips series tailored for advocacy organizations interested in registries and biobanks. We hope these tips will help you in your journey of creating and cultivating your registry or biobank and foster fruitful discussion.

Week 1: Resolutions for your registry or biobank

Week 2: Setting goals for your registry or biobank

Week 3: Have you updated your community about your progress lately?

Week 4: How do researchers acknowledge your registry or biobank?

Week 5: Annual review of policies, protocols and procedures

Week 6: Working with medical and scientific advisors

Week 7: Registry questionnaire design and data standardization

Week 8: Networking at scientific meetings

Week 9: Recruiting participants for your registry or biobank

Week 10: Participant retention in your registry or biobank

Week 11: Developing your registry questionnaire

Week 12: Research Ethics and Stewardship

Week 13: The Institutional Review Board

Week 14: Best Practices

Week 15: Ownership and Access

Week 16: Advocacy Organizations and Research Initiatives

Week 17: Evaluating Information

Week 18: Developing a Budget

Week 19: Study design – participants

Week 20: The IRB protocol

Week 21: Vendor selection

Week 22: Good vendors, good partners

Week 23: Operations for your Registry or Biobank

Week 24: Contingency Planning

Week 25: Making Researchers Aware of your Collection

Week 26: Making data and samples available to researchers

Week 27: Collecting samples

Week 28: Sample processing and storage

Week 29: Tips for working with your IRB

Week 30: Mapping the landscape of your advisers

Week 31: Biological samples and derivatives

Week 32: Mechanisms for sample collection

Week 33: Participant vs. provider-entered data

Week 34: Processes and procedures for registry data

Week 35: Pre-analytic variation

Week 36: Strategies for engaging your community

Week 37: Audit trails and data access

Week 38: Staffing your registry or biobank

Week 39: Roles for advisors

Week 40: Fundraising for your registry or biobank

Week 41: Cost recovery

Week 42: Evaluating potential partnerships

Week 43: Data curation

Week 44: Strategies for data entry

Week 45: Do you need a scientific director?

Week 46: Research coordinators

Week 47: Stewardship

Week 48: Conflicts of interest

Week 49: Insuring your biobank samples

Week 50: Backing up data

Week 51: Good advice

Week 52: Happy New Year and planning for 2012

Week 53: Making your calendar work for you

Week 54: ISBER Assessment Tool

Week 55: Ethical dilemmas and professional integrity

Week 56: Do you need a business plan?

Week 57: Writing a business plan

Week 58: Additional considerations for biobank business plans

Week 59: REDCap - a useful tool

Week 60: Using social media more effectively

Week 61: Security and being vigilant

Week 62: Passwords for privacy

Week 63: The IRB protocol: Are you doing what you said you would do?

Week 64: Anonymization or De-identification?

Week 65: Community engagement and social media

Week 66: Expressing gratitude to sample contributors

Week 67: Crisis Planning

Week 68: The open science movement

Week 69: Staying current in the biobanking field

Week 70: Survey question development

Week 71: Data and sample ownership

Week 72: Community advisory boards

Week 73: Natural history studies I

Week 74: Natural history studies II

Week 75: Organizing Biobank Alliances

Week 76: Research Match

Week 77: ISBER Best Practices 2012

Week 78: Questionnaire design: things to avoid

Week 79: Project Management: the initiation stage

Week 80: Project management: the planning stage

Week 81: Stakeholder analysis: Identifying stakeholders

Week 82: Attributing value and prioritizing stakeholders

Week 83: Collaborating in Science

Week 84: Reviewing IRB Resources

Week 85: Natural history study resources

Week 86: Biospecimen science resources

Week 87: Project management tools

Week 88: Common data elements

Week 89: Using GUIDs

Week 90: Returning results

Week 91: Data Dictionary

Week 92: Listing samples in RD-HUB

Week 93: Branding and Marketing

Week 94: Why marketing your collection is important

Week 95: Marketing your collection to researchers

Week 96: Emergency preparedness

Week 97: NCI Specimen Locator

Week 98: Soliciting feedback

Week 99: The importance of planning

Week 100: Additional resources