There are two major types of AHC clinics, research clinics, and medical treatment clinics. Research clinics include an investigator working on an AHC research project. Medical treatment clinics include a physician focused on treating an AHC patient. These clinics may only focus on AHC or may include a variety of other disciplines; these are referred to as multi-disciplinary clinics.
The table below explains some of the differences between clinics.
| Research Clinic | Medical Treatment Clinic | |
|---|---|---|
| Intent | Answers specific questions through research involving numerous research volunteers. | Addresses the needs of individual patients. |
| Intended Benefit | Generally designed and intended to benefit future patients. | Intended to benefit the individual patient. |
| Funding | Usually paid for by drug developers, government agencies, or foundations. | Funded by individual patients and their health plans. |
| Timeframe | Depends on research protocols. | Requires real-time decisions. |
| Consent | Requires written informed consent. | May or may not require informed consent. |
| Assessment | Involves periodic and systematic assessment of patient data. | Based on as-needed patient assessment. |
| Protections | Protected by government agencies, institutional review boards, professional standards, informed consent, and legal standards. | Guided by state boards of medical practice, professional standards, peer review, informed consent, and legal standards. |
| Certainty | Tests theories of unproven benefit to the patient. | Uses products and procedures accepted by the medical community as safe and effective. |
| Access to Information | Considered confidential intellectual property. | Personal medical records are available upon request only to the patient. |
| Release of Findings | Typically published in medical journals after clinical research ends. | Individual medical records are not released to the general public. |
Source: AHCF and https://www.fda.gov/ForPatients/ClinicalTrials/ClinicalvsMedical/default.htm
Deciding on Whether or Not to Visit an AHC Clinic
Traveling with a child who has AHC can be a daunting task. Some issues to consider when making your decision to travel to a clinic include the following:
- Understand all the possible benefits and risks involved with traveling to a clinic.
- Understand how long the appointment(s) will last, where it will be conducted, and the overall visit plan.
- Understand how care will be managed once back at home.
- Understand how your insurance coverage may coordinate with appointment expenses.
- If you participate in a research study, understand what will be expected of you as a participant.
- Be sure to ask any questions and express all concerns about your visit or participation in a study.
- Understand the registration requirements and which medical records may be needed before your appointment.
- Remember that participation in a research study is voluntary, and you will decide on completing the entire study before enrolling.
AHC Clinics in the United States
Our community is extremely fortunate to have a number of research and medical treatment clinics within the United States. Contact us to find out more about them.
