No. 236   September 2002

GENETIC & RARE DISEASES INFORMATION CENTER Did you know there are over 6,000 genetic and rare diseases for which information which is hard to find? Initially introduced as orphan diseases by the Orphan Drug Act passed in 1983, these information resources needs to be identified and made readily accessible to the general public, health care professionals, and bio-medical researchers.  The Genetic and Rare Diseases Information Center, PO Box 8126, Gaithersburg, MD 20898-8216, created by the National Institutes of Health’s National Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD) provides free phone reference service Monday through Friday 12 PM to 6 PM Eastern Time.  E-mail (gardinfo@nih.gov) and fax (202-966-5689) requests can be sent in 24 hours/day to obtain authoritative information about a specific illness as found in reliable web sites, articles, and book chapters.  The Office of Rare Diseases web site at http://rarediseases.info.nih.gov provides links to  Rare Disease Terms and information.  The Rare Diseases Terms page http://ord.aspensys.com/asp/diseases/diseases.asp begins with a definition of Orphan or Rare Disease and a list of disease names that can be searched by keyword.  The Rare Diseases Terms   list is a series of links to a page of information for each Disease, and the page includes an E-mail link for submitting any questions directly to the Center’s reference staff. The NHIGRI web site at http://genome.gov/Health  leads to the NIH’s Center’s Quick Reliable Source for Genetic Information.  This new Center was publicized in the (“Research Notebook” feature) article “Information Source on Rare Diseases” in the FDA Consumer, V. 36, No. 5, September-October, 2002 page 8 (HE 20.4010:36/5). The Genetic and Rare Diseases Information Center and its services are announced in the February 20, 2002 NIH Press Release http://www.nih.gov/news/pr/feb2002/nhgri-20.htm.   In response to my e-mail query, this Center provided some of the information in this newsletter article. 

ORPHAN DISEASE ACT OF 1983 GETS A 2002 SUPPLEMENT “Before 1983, some 38 orphan drugs had been developed. Since the enactment of the Orphan Drug Act, more than 220 new orphan drugs have been approved and marketed in the United States and more than 800 additional drugs are in the research pipeline.  Despite the tremendous success of the Orphan Drug Act, rare diseases and disorders deserve greater emphasis in the national biomedical research enterprise.” Thus, in 2002, Congress passed the “Rare Diseases Act of 2002” P.L. 107-280 which (1) amends the Public Health Service Act to establish an Office of Rare Diseases at the National Institutes of Health; and (2) increases the national investment in the development of diagnostics and treatments for patients with rare diseases and disorders. This law also authorized the establishment of a centralized clearinghouse for rare and genetic disease information that will provide understandable information about these diseases to the public, medical professionals, patients and families, i.e. the Genetic and Rare Diseases Information Center.  Congress also passed the  “Rare Diseases Orphan Product Development Act of 2002” P.L. 107-801 which increases the national investment in the development of diagnostics and treatments for patients with rare diseases and disorders.

RARE DISEASE/ORPHAN DRUG INFORMATION With the creation of the Genetic and Rare Disease Information Center and the Food and Drug Administration’s “List of Orphan Designations and Approvals” web site, These NIH and the FDA site provide update authoritative and current information about rare diseases and orphan drugs. It may be possible to do “two-stop” shopping for most answers about a Rare Disease and the Orphan Drug(s) that treat it.  A visit to the National Institutes of Health, Office of Rare Disease’s Rare Diseases Terms list http://ord.aspensys.com/asp/diseases/diseases.asp will identify and provide the details about the disease you are researching.  The Center provides current biomedical and research information about drug products that relate to your disease. For any drug product(s) information that is not provided by this Center, a visit to the FDA, Office of Orphan Drugs http://www.fda.gov/orphan/designat/index.htm  and the List of Orphan Designations and Approvals  http://www.fda.gov/orphan/designat/list.htm  leads to any drug product that has received an “Orphan Designation.”  This FDA site provides six downloadable drug lists (files) into an Excel spreadsheet option. These six cumulative lists cover three time periods. The first list covers all products that have received Orphan Designation and the second, all Orphan Designated Products that have received Marketing Approval.   The third list is of all products that have received Orphan Designation, year-to-date, and the fourth list is for all Orphan Designated Products that have received Marketing Approval, year-to-date. The fifth list is for all products that have received Orphan Designation in the past month, and the sixth is a list of all Orphan Designated products that have receive Market Approval in the past month.

FOURTH ANNUAL NATIONAL COMPENSATION SURVEY The Department of Labor has released the results of its latest annual earnings survey of establishment-based employers in 154 metropolitan and nonmetropolitan areas in all fifty states.  The earnings data is taken from the “straight-time hourly wages or salaries pay to employees and include incentive pay, cost of living adjustments, and hazard-pay,” but tips are not included since the employer does not pay them.  The first of three tables of earnings data is Table I, “Hourly earnings of full-time workers and weekly and annual hours, National Compensation Survey, 2000”.  Of the 247 occupations listed from highest to lowest hourly wage, this tip limitation puts the occupation category  “waiters and waitresses” who earn $ 3.99 per hour, last at No. 427.  “Airplane pilots and navigators” who earn are $95.80 per hour are first and are followed by No. 2 “Physicians” who earn  $61.19 per hour.  Lawyers, ranked No. 14, earn $38.74 per hour, but does this include self-employed lawyers who earn $150 (or more) per hour? This Survey may accurately report all those occupations employer-based but its results need to be “interpreted” to be fully understood.  John E. Buckley, a BLS Economist explains in “Rankings of full-time occupations, by earnings, 2000” in the Monthly Labor Review, V. 125, No. 3 March, 2002, pages 46-57  (L 2.6:125/3) how and why the Survey’s Highest and Lowest paying occupations came to high and low. He identifies the highest and lowest paying occupation groups within Table 2, and closes with a reference to Table 3, “Alphabetical index of the occupations from the 2000 National Compensation Survey,” which is in pdf file format at http://www.bls.gov/ncs/ocs/sp/ncar0002.pdf.  The National Compensation Survey 2000 text is found at http://www.bls.gov/ncs/ which also provides links to this article by John E. Buckley, and pdf file of Tables 1, 2, and 3.  The full text of the National Compensation Survey 2000 was issued in paper as BLS Bulletin 2548 and is found in some federal depository libraries (L 2.3/3-3:2000).

PRESIDENTIAL VISITS ABROAD  Did you know that, per current research, when George Washington was President he never left the United States, at least officially. The first official trip taken outside the United States was by President Theodore Roosevelt.  Presidential Visits Abroad, Visits Abroad of the Presidents of the United States, 1906 – 2002 covers all official visits to foreign countries by U. S. President during their tenure as President or President-elect. The information entries for each President also include instances of unofficial travel for vacation purposes, when such information on these visits is available.  The visits are listed in two separate sections: (1) chronologically by President (Theodore Roosevelt to George W. Bush June 30, 2002) and (2) alphabetically by host country.  Entries (for each visit) include the name of the President, the country and the city (locale) or dependent area visited, the inclusive dates of the visit, and highlights relating to each visit. Each visit is also characterized as “state,” “official,” “informal,” or “private.” For those researchers who are sensitive to country name changes, the designers of this electronic database have allowed for country name changes in the country list.   “In the country section [i.e. list] entries for [past Presidents’ visits to] countries that no longer exist have been moved under the name of the successor state and cross references provided as needed.”   In the entries under the Presidents, the name of the country as it was at the time of the visit has been retained.”  This electronic version of a rather unique source of information allow for very current information.  These two list are introduced by the Preface of the Presidential Visits Abroad web page at http://www.state.gov/r/pa/ho/trvl/pres/

 INTERPLANETARY SUPERHIGHWAY Have you ever noticed the basic layout of many of the major highways in your State? The highway engineers plan for a major highway follow a straight line with curves and bends necessary to avoid surface obstacles such as lakes, hills, valleys, etc. whenever possible. Is it cheaper to go around a mountain or to tunnel through it?  Their goal is to build a safe and useable roadway within reasonable time and costs.  NASA’s goal was to get a spacecraft onto, near, or fly by the Moon and other celestial bodies in outer space. A highway for space probes to go around and avoid the gravitational pull of all the celestial bodies.  NASA needed an interplanetary superhighway so Martin Lo conceived the computer software that was used to design the Interplanetary Superhighway that was the flight path for NASA’s Genesis Mission. The Genesis Mission, launched in August 2001, will use the “freeway in space” to collect solar particles for return to Earth.  “Each planet and moon has five locations in space called Lagrange points, where one body’s gravity balances another’s.  To find the Interplanetary Superhighway, Lo mapped some possible flight paths among the Lagrange Points, varying the distance the spacecraft would go and how fast or slow it would travel. Like threads twisted together to form a rope, the possible flight paths form tubes in space. Lo plans to map out tubes for the whole solar system.”  Historically, Lo’s research is based on theoretical work begun in the late nineteenth century by the French mathematician Henri Poincare. There were later versions of the Superhighway used in 1978 and 1985 space missions. The Interplanetary Superhighway  and the Lagrange Points for each celestial body are NASA’s “highway in space” for future easier and cheaper manned and unmanned space missions. Interplanetary Superhighway Makes Space Travel Simpler, July 17, 2002 http://www.jpl.nasa.gov/releases/2002/release_2002_147.html is the NASA News Release with all this and more information.       

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July 9, 2003

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