PA is Under-Researched
The first step in improving diagnosis and treatment of primary aldosteronism involves a paradigm shift to acknowledge that:
- The disease is a major public health issue;
- Hypertension is mostly driven by salt and aldosterone;
- The phenomenon is not a “secondary” but “primary” cause of hypertension, and is actually at the core of what is called “essential” hypertension.
The translation of this paradigm shift into practicable solutions requires mobilization at all levels of healthcare systems, from regulatory agencies to educational institutions, and healthcare providers.
Granted that such rallying can occur, solutions will remain inadequate unless the research gap limiting proper understanding of the disease can be bridged.
If sodium and potassium play an essential role in hypertension, how much sodium is too much and how much potassium is enough are unknown. So is the genesis of primary aldosteronism. Excess aldosterone remains to be defined. Hormonal levels remain to be reliably quantified, and their measurement standardized. Effective treatments which can be implemented at-scale remain to be found.
Bridging this gap will not only require the allocation of sizable funding, it will necessitate the coordination of an effective research agenda.
The execution of such agenda will also require considerable manpower, a resource still lacking since the discovery of the disease in 1955.
Compared with primary aldosteronism, Parkinsonian disorders benefit from resources ten times superior although their prevalence is at least ten times lower:
|Resource Gap||Parkinsonian Disorders||Primary Aldosteronism|
|Number of Patients||1 Million in the US
10 Million worldwide
|At least 10.7 Million in the US
At least 250 Million worldwide
|Publications||Over 114,000||Less than 10,000|
|Researchers||Over 64,000 worldwide||Less than 5,200 worldwide|
Lack of PA Registry
The study of complex diseases requires rich datasets – registries – collected from thousands of patients over time.
Only a handful of national registries have been developed for primary aldosteronism.
Not only is the needed sharing of data hindered, the sample size of too many studies continues to lack representativeness, thereby preventing generalization of results and perpetuating the status of rare disease.
If you or someone you know has long-standing and/or hard to control hypertension, we invite you to sign the Foundation’s Open Letter to help create the paradigm shift needed to accelerate research, starting with the creation of a robust registry dedicated to advancing diagnosis and treatment of primary aldosteronism.
In its mission and advocacy role, the Foundation considers the dissemination of accurate medical information of the utmost importance. The Foundation has the privilege to count some of the world’s experts in primary aldosteronism as members of its Scientific Advisory Board. They either lead or are part of teams which are at the forefront of research in the US and Europe:
- Endocrine Causes of Vascular Damage at Radboudumc
- Endocrine Hypertension at Mayo Clinic
- Endocrine Hypertension at William Harvey Institute
- Endocrine Hypertension at USZ
- Rainey Laboratory
- The Vaidya Lab
Supporting research is one of the Foundation’s core priorities. While funding existing and new clinical studies is a long-term goal, the Foundation’s immediate objectives are to:
- Help demonstrate the high prevalence of primary aldosteronism,
- Identify and connect patients with clinical studies, and
- Translate knowledge for patients and clinicians who are not familiar with the disease.
The Foundation is also dedicated to contributing to the body of knowledge by including patients in the awareness and discovery process. As more patients are diagnosed and treated, experience with the disease will increase. Generating a feedback loop from this experience into research will help advance the understanding of excess aldosterone.
Share Your Story
- Do you have a diagnosis or do you suspect you have PA?
- Are you experiencing difficulties finding adequate care?
- Have your symptoms been resolved by adrenalectomy?
By sharing your story and signing the Foundation’s Open Letter, you will help us demonstrate that primary aldosteronism is not a rare disease, and that resources are urgently needed to advance research.