- What is the purpose of this database?TMS is providing this database as a service to patients, caregivers, families, physicians and other health care professionals who are seeking appropriate care for mast cell disorders. In addition, this database will serve as part of the infrastructure for the future network of centers collaborating across the Americas in research, education, and patient care, which is currently in development.
- Can patients enroll their physician without the physician knowing by using the physician entry portal?No. This portal is for physicians only. The built in safeguard is that the Database Registry Nurse calls the physician who submitted an enrollment to verify its source, and to discuss practice parameters and preferences. No entry goes “live” until this vetting process has been completed and the Database Nurse has approved the entry.
- What control do I as a physician have over the information published on my database entry?You provide exactly what information you would like to have listed publicly. You will have an opportunity to review this with our Database Nurse before your entry goes “live”. You can edit your entry at any time, or even remove it. Any changes you make to your entry will generate an alert to the Database Nurse so that she can be aware of any updates you are making.
- What kinds of options are available to me within the parameters of this database?You can select what information you would like to share with patients, include any screening tests that you require to be completed in advance of scheduling an appointment or of actually seeing the patient, provide contact information to you and/or your office/clinic personnel, and even designate, if you prefer, some private contact information for TMS to keep on file in case a patient of yours contacts us with an emergency. This would be kept with the Nurse who coordinates the Physician Database. In addition, as stated above, you can edit or remove your entry at any time.
- If I decide to make a major change in my practice, i.e. go from seeing all patients with systemic mastocytosis including more aggressive variants to seeing only patients with indolent systemic mastocytosis, what is the best way to make that change?You can do it one of two ways: you can email the database nurse at databaseRN@tmsforacure.org, and work with her to make the changes, or you can go into your own entry, make the changes, and the database nurse will receive notification of the change. She may contact you if any clarification is necessary.
- How do I share this TMS Physician Database opportunity with colleagues who may want to join?Simply give them the website, www.tmsforacure.org/physiciandatabase . They can self-enroll, edit, or remove themselves at any time!
- Do you have a question not included here?Contact the Database Nurse at:databaseRN@tmsforacure.org.