Step 6.
Review & Clean Your Data

6.0 Overview

Check the data you have collected for any errors and identify any broader problems with the data collection process. Review your data management and security procedures to ensure protection of participants’ information.

6.1 Develop Quality Control Procedures

After participants have entered their information into your registry, review the data to identify and correct entry errors. Identify any problems that may affect the data collection process, such as issues with converting addresses to the standard U.S. Postal Service format or other glitches that prevent participants from completing certain fields. If participants commonly skin over specific questions, assess whether the question can be rephrased. Consider whether the question asks for information that participants are uncomfortable providing.

Examples of common data entry errors:

  • Incomplete fields
  • Incorrect data
  • Missing data
  • Duplicate submissions

Use the RaDaR Tool: Data Quality Control Checklist to help you access the quality of the data you’ve collected for your registry.

6.2 Get Input from Registry Participants

After reviewing your registry data, you may find you need to contact participants to correct data entry errors. If data are missing, explore why the fields are not completed. It is important to determine whether the data entry error is a user error or an issue with a question or the data collection tool.

Questions to help identify the cause of data entry errors:  

  • Did the participant feel uncomfortable completing the field? Why?
  • Did the participant understand the question?
  • Did the participant attempt to complete the field?
  • Did technical difficulties arise? What were the technical difficulties?
  • What other explanation might describe the data entry error?

If you identify problems in the data collection process, fix the issues and then contact the participants and ask them to enter the missing information. If many participants have the same issues with entering information (and it’s not a data collection problem you can resolve), develop a frequently asked questions (FAQ) page that clarifies the data input process, and make it easily accessible on the registry website. 

6.3 Protect Your Data

You determined how to collect and store data in Step 4 of Set Up Your Registry. If you have not already developed a plan for managing and protecting your participants’ data, do so now. You need to ensure that your participants’ data are secure. Develop an action plan in case a security breach accesses participants’ personally identifiable information (PII). Maintaining the trust of your participants and guaranteeing data security is paramount in ensuring the success of your registry.

Your data security protocol could address these or similar questions:

  • Who can handle and access data?
  • Which data do you share with researchers; which do you not?
  • How often should you update your data security protocol?
  • How do you update your registry as data security best practices evolve?
  • How do you lock down the system if there is a breach?
  • How and when should participants be notified if there is a breach?
  • Which stakeholders or strategic partners should you notify and what should you tell them?
  • How do you recover from a security breach?

Decrease the likelihood of data breaches by taking steps to minimize risks. Here are some example measures you can customize to develop and implement a data security protocol that meets the unique needs of your registry.

  • Establish secure access. Determine how to control access to the data to ensure your registry is secure and to minimize exposure to your participants’ sensitive data.
  • Develop security guidelines. Clearly set guidelines and expectations for security measures in a written policy for anyone who works with the registry data.
  • Set up automated detection systems. These can alert you when there is unusual activity involving sensitive data.
  • Maintain software and security updates. To keep up with the increasingly sophisticated ways breaches occur, make sure that your team is keeping up with security patches to address new methods of attacks.
  • Create a data breach response plan. Data breaches can happen regardless of how many precautions you have taken. Establishing a response plan will help you determine the steps to take in the event of a breach. This plan should include a strategy for alerting participants of any threats involving their personal information.

6.4 Create Registry Reports

After the data are collected, you’ll need a procedure for generating reports to help you document, describe, and share the data. Gathering the information in easy-to-digest formats will help you look for patterns, trends, and unexpected results—and enable you to convey these findings to researchers, patient advocacy groups, and other stakeholders.

Examples of basic information to categorize and analyze include total number participants, age distribution, gender, geographic distribution, race, ethnicity, and diagnosis details. Your registry platform may include report options for analyzing data; spreadsheet software programs are also available.

Check the data you have collected for any errors and identify any broader problems with the data collection process. Review your data management and security procedures to ensure protection of participants’ information.

After participants have entered their information into your registry, review the data to identify and correct entry errors. Identify any problems that may affect the data collection process, such as issues with converting addresses to the standard U.S. Postal Service format or other glitches that prevent participants from completing certain fields. If participants commonly skin over specific questions, assess whether the question can be rephrased. Consider whether the question asks for information that participants are uncomfortable providing.

Examples of common data entry errors:

  • Incomplete fields
  • Incorrect data
  • Missing data
  • Duplicate submissions

Use the RaDaR Tool: Data Quality Control Checklist to help you access the quality of the data you’ve collected for your registry.

After reviewing your registry data, you may find you need to contact participants to correct data entry errors. If data are missing, explore why the fields are not completed. It is important to determine whether the data entry error is a user error or an issue with a question or the data collection tool.

Questions to help identify the cause of data entry errors:  

  • Did the participant feel uncomfortable completing the field? Why?
  • Did the participant understand the question?
  • Did the participant attempt to complete the field?
  • Did technical difficulties arise? What were the technical difficulties?
  • What other explanation might describe the data entry error?

If you identify problems in the data collection process, fix the issues and then contact the participants and ask them to enter the missing information. If many participants have the same issues with entering information (and it’s not a data collection problem you can resolve), develop a frequently asked questions (FAQ) page that clarifies the data input process, and make it easily accessible on the registry website. 

You determined how to collect and store data in Step 4 of Set Up Your Registry. If you have not already developed a plan for managing and protecting your participants’ data, do so now. You need to ensure that your participants’ data are secure. Develop an action plan in case a security breach accesses participants’ personally identifiable information (PII). Maintaining the trust of your participants and guaranteeing data security is paramount in ensuring the success of your registry.

Your data security protocol could address these or similar questions:

  • Who can handle and access data?
  • Which data do you share with researchers; which do you not?
  • How often should you update your data security protocol?
  • How do you update your registry as data security best practices evolve?
  • How do you lock down the system if there is a breach?
  • How and when should participants be notified if there is a breach?
  • Which stakeholders or strategic partners should you notify and what should you tell them?
  • How do you recover from a security breach?

Decrease the likelihood of data breaches by taking steps to minimize risks. Here are some example measures you can customize to develop and implement a data security protocol that meets the unique needs of your registry.

  • Establish secure access. Determine how to control access to the data to ensure your registry is secure and to minimize exposure to your participants’ sensitive data.
  • Develop security guidelines. Clearly set guidelines and expectations for security measures in a written policy for anyone who works with the registry data.
  • Set up automated detection systems. These can alert you when there is unusual activity involving sensitive data.
  • Maintain software and security updates. To keep up with the increasingly sophisticated ways breaches occur, make sure that your team is keeping up with security patches to address new methods of attacks.
  • Create a data breach response plan. Data breaches can happen regardless of how many precautions you have taken. Establishing a response plan will help you determine the steps to take in the event of a breach. This plan should include a strategy for alerting participants of any threats involving their personal information.

After the data are collected, you’ll need a procedure for generating reports to help you document, describe, and share the data. Gathering the information in easy-to-digest formats will help you look for patterns, trends, and unexpected results—and enable you to convey these findings to researchers, patient advocacy groups, and other stakeholders.

Examples of basic information to categorize and analyze include total number participants, age distribution, gender, geographic distribution, race, ethnicity, and diagnosis details. Your registry platform may include report options for analyzing data; spreadsheet software programs are also available.

Continue to Step 7. Promote Your Registry after you finish Step 6