The IH Registry for Physicians and Researchers
The Intracranial Hypertension Research Foundation, in partnership with Casey Eye Institute at Oregon Health & Science University (OHSU) in Portland, Oregon, established the Intracranial Hypertension Registry in 2003. With a growing population of more than 800 patients, it is the largest and only patient registry of its kind for chronic IH in the world.
Information received via Patient and Physician Questionnaires is entered into a relational database, using customized software maintained on a standard PC platform connected to the OHSU network.
Our objectives are:
• Enhance the volume and quality of peer-reviewed IH research.
• Stimulate innovative, new IH research.
• Contribute to the discovery of more accurate prevalence and incidence information.
• Achieve greater prominence of IH for funding and attention in the public policy arena.
• Broaden informed awareness of IH among health professionals.
Why The IH Registry is Important:
By facilitating access to detailed, comprehensive information about large numbers of IH patients, the IH Registry strives to stimulate IH research; enhance the quality of research findings; promote the development of new diagnostic and treatment modalities; support clinical trials and highlight the importance of IH in the competition for research dollars. Access to clinical trials also gives patients an opportunity to directly contribute to better quality of care. Physicians who support the IH Registry are contributing to research that will benefit their patients.
Problems to be Addressed:
Resource Fragmentation. Since professional attention tends to focus on specific aspects of the underlying disease and is fragmented among many different specialists, the scope and magnitude of the IH problem is not recognized among physicians, healthcare institutions or public policy leaders.
Diffusion of Responsibility. No single physician is likely to have a complete picture of any individual patient’s overall history, because evaluation and treatment of IH usually involves several different specialties, none of whom are likely to have global responsibility for the patient’s management.
Unsatisfactory Treatment Options. After more than 100 years, IIH management remains, for the most part, unsatisfactory. Shunts to divert CSF flow are of transient benefit in about 50 percent of patients, but are subject to serious complications and require frequent revision. Weight loss is helpful in a subset of overweight, 20-45 year old female patients, but only if it is sustained. Off-label use of carbonic anhydrase inhibitors, usually acetazolamide (Diamox), helps some patients, but often at extremely high doses that are poorly tolerated and become less effective over time. A recent authoritative review reveals no generally effective medical, surgical or pharmacologic treatment for IIH. Chronic secondary IH sometimes responds to management of the underlying disease, but often does not.
How You Can Help:
Play an active recruitment role. Talk to your IH patients about the IH Registry and explain why it is important. Have enrollment materials available in your office and distribute them to receptive patients. Facilitate stocking and distribution of IH Registry information at hospital health information desks and departmental offices. Tell your colleagues. Take the time to complete the Physician Questionnaire.
How We Can Help You:
The IH Registry maintains the Intracranial Hypertension Special Interest Group (IHSIG) for physicians who want to take an active role in patient recruitment; we are happy to provide you with the information on the Registry to provide to your patients In addition, as researchers query the IH Registry for patients suitable for forthcoming clinical trials, IHSIG members will be notified of these opportunities for their patients. If you are interested in research opportunities, please contact us directly at 503.418.2141.
How it Works:
Patient-Initiated Admission. A patient who believes that he/she has IH may contact us to receive these materials by US mail. Materials include a consent form, authorization to obtain medical information and a demographic summary that provides contact information for physician(s) responsible for his/her care. We send a specialty-specific Physician Questionnaire to each physician listed by the patient, with a signed authorization form. For patients able to provide more information, a detailed optional questionnaire is available.
Physician-Initiated Admission. Physicians may also enter their patients into the IH Registry, after obtaining consent. In this approach, the physician completes the medical questionnaire after obtaining a signed Authorization form from the patient. Both the questionnaire and a copy of the Authorization are forwarded to the Registry and upon receipt, we contact the patient.
Registry admission materials, including the Physician Questionnaire, can be directly obtain from us. The physician questionnaire may be completed by hand or onscreen before printing.
The Physician Questionnaire is specialty-specific. It is detailed because the pathobiology of IH is poorly understood and the information collected may be useful for a variety of research. The questionnaire attempts to address many areas of potential interest, some of which will may ultimately prove to be more valuable than others. A physician who elects not to complete the questionnaire has the option of forwarding the patient’s records to the IH Registry for abstracting.
Data Security and Confidentiality:
All aspects of IH Registry operations are in accord with current OHSU and HIPAA requirements concerning data security, confidentiality and informed consent. The data management system has been developed specifically to assure the highest level of integrity, data security and confidentiality.
There is no cost to patients for joining the IH Registry or to their physicians for submitting health information. We do not generally have funds available to compensate physicians for their time or out-of-pocket costs. There is a cost-recovery fee for providing IH Registry data to researchers; the amount varies with the complexity of the specific request.