Develop the Right Questions to Ask

Collect Patient Information

The first required questions to include in your registry are the patient’s name and age. Collect the patient’s date of birth to know his or her exact age, to be able to track it over time, and for researchers who recruit patients from specific age groups. 

If you allow a caregiver to register on behalf of a patient, include a question to clarify that the patient is not filling out the registry form, and capture the caregiver’s name.

The next set of questions address participant contact information. Depending on how you intend to contact them, typical information to gather includes participants’ e-mail address, mailing address, and phone number. To reduce errors, confirm data entry, such as having participants enter their e-mail address twice or using postal address verification.

The Clinical Data Interchange Standards Consortium (CDISC) develops data standards that are used worldwide to streamline medical research. The United States Core Data for Interoperability (USCDI) is a standardized set of health data classes and data elements for nationwide, interoperable health information exchange and includes patient demographic standards. Examples of other data standards include Systematized Nomenclature of Medicine (SNOMED) and Unified Medical Language System (UMLS). There are also other data standards.  Which one you choose is less important than selecting one data standard and using it consistently.