Question 67: Were disease modifying therapies given or stopped since the date of last report?

Indicate if the recipient received any disease modifying therapies (see question 68 for a list of common disease modifying therapies) or if the recipient discontinued a disease modifying therapy, since the date of last report. If the recipient received disease modifying therapy(ies) or discontinued a disease modifying therapy in the current reporting period, select Yes.

If the recipient did not receive disease modifying therapy(ies) in the current reporting period, report No.

If no information is available to determine if disease modifying therapy was given in the current reporting period, select Unknown.

Report Not applicable if the recipient started a disease modifying therapy in a prior reporting period and is still receiving therapy on the date of contact for the current reporting period.

Questions 68 – 69: Specify the disease modifying therapy:

Indicate which disease modifying therapy the recipient received. If the administered agent is not listed, report Other and specify the agent in question 69. Report the generic name of the agent, not the brand name.

  • Crizanlizumab (Adakveo): A monoclonal antibody given to reduce the frequency of vaso-occlusive crises.
  • Hydroxyurea: A type of chemotherapy. Common brand names include Droxia and Hydrea.
  • L-Glutamine: An amino acid in the form of an oral powder given to reduce the complications of sickle cell disease. Also known as Endari.
  • Voxelotor (Oxbryta): An oral medication given to inhibit sickle hemoglobin polymerization.

Questions 70 – 71: Date therapy started:

Indicate whether the start date is Known or Unknown. If the therapy start date is Known, report the date the recipient began this line of therapy. If the start date is partially known (i.e., the recipient started treatment in mid-June 2010), use the process described for reporting partial or unknown dates in General Instructions, Guidelines for Completing Forms.

If therapy was started in a prior reporting period and continued to the current reporting period, select Previously reported.

If the therapy start date is not known, select Unknown.

Questions 72 – 73: Date therapy stopped:

Indicate if the therapy stop date is Known or Unknown. If the therapy stop date is “Known,” use the following instructions to report the end date:

  • If the therapy is administered in cycles, report the date the recipient started the last cycle for this line of therapy.
  • If the therapy is administered on a daily basis, report the last date the recipient received the line of therapy being reported.

If the stop date is partially known, use the process for reporting partial or unknown dates as described in the General Instructions, Guidelines for Completing Forms.

If the disease modifying therapy stop date is not known, select Unknown.

Report Not applicable if the recipient is still receiving therapy on the contact date for the current reporting period.

Last modified: Jul 26, 2020

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